Wednesday, October 18, 2006

Well, I've been getting a lot of comments, both to here and my email, and I'm happy that people are finally seeing the ignorance that's being promoted.

A lot of you have joined her Soft-Sound Sensitivity Syndrome board to promote my thinking, and I thank you, but do realize, I do not promote negativity. I'd advise you to not do anything that your moral compass- or perhaps someone elses- would disagree with.

As a whole though, I agree with your thinking. This woman has done much to prevent real sufferers from getting the help they need. All she has done is to push her own untested methodology to treat a poorly understood diesease.

Why would anyone do this? Well, it turns out that dollar-signs are very opaque, and very bright.

So, by claiming it's a variant of hyperacusis, she treats it. How much you wanna bet that people pay with insurance?

What do you suppose insurance companies call filling out paper work calling the actual disorder something else so that you can treat it?

I made a little phone call tonight and they seem to think it's called Fraud. I dunno what that means, but they said something about prison time and massive fines.

Monday, July 24, 2006

Hello

I am a sufferer of Soft Sound Sensitivity Syndrome- at least thats what Marsha Johnson, a master's level audiologist calls it. She claims to have 'discovered' the condition and gave it this name (which is entirely erroneous).

I was for a short time a member of her Yahoo.com mailing list, before getting kicked out for diagreeing with her, and asking her questions that she couldn't answer.

Before I explain what this is all about, I should first discuss "Soft Sound Sensitivity Syndrome" or 4S for brevity's sake. 4S is a condition that causes a very select group of sounds to provoke an extremely anxious response. These sounds are always caused by a living creature, I'd say 98% of the time a person and maybe the other 2% by pet. These sounds are often chewing noises. In my case crunching is the absolute worst. Other intolerable noises include whistling, typing, tapping and anything else a human might create that would annoy someone. While you might be annoyed, I am driven to the edge of sanity by some of these sounds, leaving the room when I hear them or asking the other person to stop. In college, I have walked out of classes because I could not take someone eating an apple on the other side of the room. For younger children, they may be forced to eat away from their family, in bedrooms or other safe havens.

This sounds extreme, but for some reason we have become so fixated on these sounds that we cannot tolerate them. By my best guess, it is some form of Obsessive Compulsive Disorder. The condition makes perfect sense in light of a psychological phenomena known as Thought-Avoidance Paradox.

So, what did we disagree about? In audiology there's a relatively uncommon but extremely debilitating condition known as Hyperacusis which Ms. Johnson specializes in (from my understanding). Hyperacusis is a condition in which all sounds are perceived as deafeningly loud- from the tiniest fan running to an air horn.

Ms. Johnson claims that Soft Sound Sensitivity Syndrome is actaully a subset of Hyperacusis, despite the fact that in 4S there is no pain, that the sounds do not appear louder than other sounds, and that the physical nerve problems that cause Hyperacusis are not capable of selecting specific sounds to provoke anxiety with.

Despite having asked her repeatedly (10 plus times at last count) to explain how she came to this conclusion, she has dodged the issue. I have emailed her again today- twice, both replies to her emails- and I haven't gotten a response. I dunno if I ever will.

How does she possibly convince anyone that her theory is right then? She tells them it is. People like me who have it have often seen medical doctors who tell us it is psychological, and then when we see a psychtherapist, they either refuse to treat or their treatment isn't very effective. Ever hear of someone cured of Obsessive Compulsive Disorder? Didn't think so. So, she tells them how bad therapists are and that she knows how they feel and then she treats them for Hyperacusis (if she actually treats them).

She has not published any studies on the condition or her treatment, so I cannot speak to her methods effectiveness. I know that it involves playing a sound in the ear, in increasing volumes, so it is possible that she is accomplishing some sort of a desensitization of the behaviorist variety. I don't think it accomplishes anything, but I'm not sure.

Actually, though, Ms. Johnson hasn't published anything on this condition besides a letter to a Tinnitus Magazine- the type sent to families and suffers of Tinnitus so they can keep up on the current treatment and prognosis sorts of things. It is the farthest thing from a respectable research journal, and it doesn't pretend to be. Only Marsha Johnson pretends it is.

Here is a quote from one of her subscriber's messages to me:

"Marsha has set this site up and came up with a name for this
problem: therefore we see her as a person who we can work with to help
address the issues we face. She is - for many - the only person who is
seriously investigating this problem and therefore we want to work with her. "

This is a great example of how brainwashed these people have became, or perhaps he simply knows something no one else does. Marsha is not in anyway seriously investigating this disorder, she has never published a study, not even a case study. She hasn't conducted one (and with her Masters Degree is audiology, she isn't really capable of doing so). All I can tell she's doing is treating people- and charging them outrageously for it- for a condition she doesn't know the first thing about besides her illogical speculation.

Well, I'll give her the benefit of the doubt. She might have a logical base to her speculation, she has just, to date, refused to provide that logic.