What’s in a name

1. Is it worth substituting two difficult words, spasmodic dysphonia for two more laborious words, laryngeal dystonia.

2. The words spasmodic dystonia is associated and identity with National Spasmodic Dysphonia Association. Also the wording is used on the web, in literature for the most part and possibly in insurance coding.

3. If we use the term laryngeal dystonia, would people shorten it to LD and other folks think this is referring to Learning Disability!?

4. Some people have discussed adding a tag line with NSDA literature such as spasmodic dysphonia -a voice disorder. Would this generic byline catch peoples eye so they could read further about the description of the disorder?

I think you make a lot of great points. I agree with all of them. The point you made in #2 referring to the fact that "spasmodic dysphonia" (versus laryngeal dystonia) is most often used in medical journals, on the internet, etc. is *extremely* important in my opinion. For those reasons alone, I think it would be a dangerous idea to consider too much of a shift in focus away from using "spasmodic dysphonia."

Re: point # 4 regarding whether to consider adding a generic byline "a voice disorder" to NSDA literature, I think it's a fine idea. Although the terms "spasmodic dysphonia" themselves are medically descriptive and imply a voice disorder, it's probably the case that a lot of people (who are not familiar with SD) don't understand that. Here perhaps the decision might also depend on the audience most often targeted by NSDA literature. If it is the "lay" public (as opposed to people w/ SD, their families, etc.), I'd say adding the byline might be more important.

Interestingly, I have heard many people with learning disabilities refer to their condition as LD so perhaps that fear of confusion between the two conditions you pointed out is legitimate.

I agree, there aren't many of us Brits around on the BB, I just wonder how many? My ENT man called it "spastic dysphonia" which really got up my nose. Actually it's not the only thing that got up my nose. I mean why he wanted to shove a camera up my nose to see my throat I can never phathom. "Go direct" I say, straight down the back of the throat, I mean it aint far is it? My doctor had never even heard of spasmodic dysphonia let alone knew what it was. I don't believe that calling it either/or will make very much difference to this little known, little cared about affliction we harbour.

Judy - You were right Mr Hawthorne did want a referral letter and prior consultation etc. so I'll probably be as quick waiting for Nottingham again - Thanks again anyway.

Talk soon

I know a lot of people will say, "In my opinion, based on etc, etc, etc, it's a voice disorder". Well, you can listen to me, as nobody from the NSDA contingent did in Greensboro, (certain others heard it loud and clear), or you can listen to the "opinions" and continue on your silly, confused and painful way.

Good luck.

"Spastic Dysphonia" was the official name of our disorder when many of us were diagnosed. Me included. I didn't hear the term "Spasmodic Dysphonia" until many years later. Some docs are only now catching up.

To add to Dot's message (since I believe she is commenting on a thread I started a couple of weeks back), I also will not ever use the initials "LD" (as I said in that thread) because both of my sons were diagnosed as Learning Disabled in the early 80's so "LD" is normally used for that particular educational disability.

Since I put two posts on that earlier thread (which blew up way beyond my expectations), I won't say much here except that we, with SD, have a very complex (multi-dimensional) vocal disorder and I personally don't think there is anything wrong with referring to it as "Spasmodic Dysphonia" within the vocal community (which most of us do) and "Laryngeal Dysphonia" if it works elsewhere ~ in the public (to community people) and in the Dystonia community.

I started to do that last month, being inspired some other powerful Dystonia patients, and the dual terminology works for me, based on audience. If it doesn't work for others, or if that seems too complicated, that's fine. It's the same disorder and I'm completely comfortable calling my case by two different terms in two different situations. It's a very complex disorder requiring both neurologists (Dystonia experts) and vocal professionals (voice experts). If we've got it, that's the way it goes. Complexity is complexity. Not made more simple by terminology.

TIME DICTIONARY
A special edition of Webster's New World Dictonary

spasm n. a sudden, involutary muscular contraction

spas-mod-ic adj. of or like spasms; fitful

spas-tic adj. of or charactericized by muscular spasms n. one having spastic paralysis

I was diagnosed in 1980 as having spastic vocal chords. Although I wasn't sure what it meant, I was very happy to know it wasn't cancer. At that time, to diagnose me, they stuck mirrors similar to the type dentists use down my throat and told me not to gag.
There is no disgrace in being told you have spastic dysphonia and why anyone would find the term offensive is beyond my comprehension.
No matter what you call it, it's not going to just go away so you might as well deal with as best as you can and get on with your lives.
I've lived with the loss of my natural speaking voice for 24 years and have seen many changes in my life that might not have occurred had I not been so afflicted. On the other hand, my life has been very interesting and I've learned to roll with the punches, look at life realistically and hopefully discovered the true worth of being human, imperfections and all.

A) the people discussing the affliction, and

B) the environment it's discussed in

What works for some folks may not work for others...and THAT"S OKAY :-D

Think about how many different labels are used to describe the same thing:

Something to Blow Your Nose With: Kleenex, tissue, facial tissue, nose-wipe

A Long-Playing Record: Album, 12", platter (old term), vinyl, 33 1/3

Carbonated Drink: Coke, Pepsi, soda (I'm sure there's a few more)

Money: Cash, cabbage, bread (old term), Washingtons/Franklins etc (for US currency), and countless terms for other denominations

Carousel: Merry Go Round, carouselle, roundabout, set of gallopers (in UK)

Theatre for Films: Movies, movie palace, picture show, cinema

Evern in the medical field there's more than one terminology to describe one ailment. Retinitis Pigmentosa is called Night Blindedness (and daytime Tunnel Vision). A chiropractor may say you have a subluxation in a vertabrae, yet someone else may say you have a kink or a misalignment. Even the term ADD (Attention Deficit Disorder) has also been called ADHD (Attention Deficit Hyperactivity Disorder).

This is just my 2 cents, but I really hate to see this BB getting pulled apart, so to speak, over this name issue.

EITHER WAY should be used, if it works for you ;-)