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Archive for February, 2009

A very powerful post by a mom, PWS

February 24th, 2009 2 comments

What I love so much about the internet is that it gives you glimpses of the visceral aspects of living.  The raw experiences captured in brief moments of time.  I ran across this post by a mom (PWS) who’s son has begun to stutter.  I’m refraining for commenting (unless asked); suffice it to say that these are the emotions felt by many, but voiced by few.

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Steven on Stuttering: Respecting others and their points of view

February 23rd, 2009 2 comments

Steven makes another great post, with today’s discussing some “hot topics” in stuttering (i.e., intensive tx programs and prosthetics) and personal boundaries of respect and tolerance.  Somewhat ironically, I wrote a paper about the use of prosthetics a number of years ago (posted both on ISAD and JSTAR)–although the funny thing is that someone from Janus contacted me and asked if they could link to my article.  And while I never intended the article to be pro-this or pro-that, since its main point was merely “let the client decide for them self”, someone at Janus seemed to think this was a flag in their camp.

Now isn’t that sad?  The freedom of personal decisions is such a novel concept that a prosthetic company actually wants to link to it?

This idea was brought home to me in a very real sense a number of years ago.  I was talking with a new friend about stuttering, and s/he began to explain their views.  And these views were some of the most unconventional and (for lack of a better word) pseudoscientific that I have heard to date.  Yet, I realized that they found peace.  So why try to attack their peace in the name of science?  Especially when “traditional science” has done such a lousy job thus far?  Live and let live.  And if someone finds peace through a path that makes no sense to you–so what?  In this case, the process may be less important than the end result.

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Hiten’s 3 self-fulfilling prophecies

February 23rd, 2009 No comments

Hiten makes some other good points about self-fulfilling prophecies and how they may relate to stuttering.  No sense recapping what he wrote; it’s not like I could improve on it–as he makes some very astute points.  But I’d just like to add an additional concept: It’s my view that stuttering becomes a disorder when stuttering (or the fear of stuttering) makes decisions for the person.  So there’s a point where concepts of self-empowerment (or perhaps self-advocacy) merge with self-fulfilling prophecies…for better or for worse.  (If you have a negative self-fulfilling prophecy, then stuttering will make decisions for you; if you have a positive self-fulfilling prophecy, then stuttering is a mostly irrelevant factor in living.)

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Pam posts on ‘The Seeker and the Journey’

February 21st, 2009 No comments

Pam makes a really great post here, describing how a simple quote changed her world perspective.  “The seeker embarks on a journey to find what he wants and discovers, along the way, what he needs.

The cool/funny thing is that I bet we (stutterers, if not people) all have this realization at some point.  Perhaps not in the same way or light, but a similar concept.  My moment of zen (so-to-speak) came as I was walking up the steps to my house in Takoma Park, MD.  Until that point, my life had meaning *after* the next rite of passage.  (Life will *really* start at HS graduation; no–college graduation; no–grad school graduation; no–PhD graduation; no–at my first real job; no–maybe at tenure.)  What I had failed to realize was that life had started since birth; I was just more or less in denial of it.  Further, time did not care whether or not I was appreciating every moment or every breath.  So from that point, I changed my perspective and began living now, while preparing for the future.

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Stutter.com is on auction

February 21st, 2009 No comments

Stutter.com is on auction with an anticipated reserve price of between $5,000 and $9,999 dollars US.  Yeah–I think I’ll pass.

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Funny thread on stuttering in songs…

February 21st, 2009 No comments

For whatever reason, I like this thread: Songs that have stuttered speech in them.  And I’d like add one: NIN, Discipline.  (And now you konw the rest of the story…)

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Stuttering’s Solved. Nevermind…

February 21st, 2009 2 comments

I guess it’s time to close up shop at Stuttering.me .  I’ll have to break the news to Tom as well.  Apparently, stuttering can be annihilated in 9 minutes–so that makes this whole time-sucking effort most useless.

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Episode 28 of the Stuttering.Me micropodcast is up

February 20th, 2009 No comments

Episode 28 is up.  On Pull-Outs, Self-Diagnoses, and Personal Empowerment.  “Speech Therapy for the Severe Older Adolescent and Adult Stutterer” is required reading for those who want to know more about stuttering modification technqiues.  On an incredible case of self-diagnoses and the release of a personal burden.  Finally, since we’re still struggling relative to the science of stuttering, we’re often left with the notion of active personal empowerment as a means of improving our quality of life.

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Stuttering Research Update: We still don’t have a clue what we’re talking about…

February 19th, 2009 12 comments

Disclaimer: I was grumpy at the original time of posting…

Ran across a pretty interesting study today in Movement Disorders.  The basic premise is this: Stuttering must be a (motor) movement disorder.  See?  Look at him?  He’s stuttering, and those are some pretty freaky motor movements, right?  It’s obvious.

So they took this “common sense” observation and tested it.  Sure enough, people who stutter have hyperactive motor activation patterns in our brain–and on both the right and left side.  When we talk, our brains light up like a freakin’ Christmas tree.  It’s just that prominent.

So this study is basically testing the premise that stuttering is a motor-innervation problem.  We stutter because our movement systems are somehow jacked up.  (This isn’t too far off from the fluency shaping perspective, that may suggest that we learned to speak incorrectly–and simply need to be retrained how to speak in a way that is incompatible with stuttered speech.)

So what did the researchers find?  Well, I wish they would have called me first, because I could have saved them a heckuva lot of time.  They found that stuttering does not appear to be a motor problem.  (Duh.)  What I’ve been saying for years is that the motor activation patters is not stuttering, it’s the body’s response to stuttering.  It’s the body’s attempt to compensate or otherwise “fix” the problem with additional motor activity.  If you want to find the problem of stuttering, you have to look further upstream…

Example: When your remote control isn’t working–what do you do?  You push the button harder.  (Like that will solve the dead battery!)  If you have a bilateral vocal fold lesion that is not allowing proper glottic closure–what does the body do?  Adds laryngeal hyperfunction to close the glottis (thereby amplifying the vocal fold lesion).

The body’s first answer toward self-correction is to add more force, and that’s exactly what the motor aspects of stuttering are:  The body’s solution to (the yet to be defined problem of) stuttering.

Update: Taking a little heat for my take on the article; I’m happy to review the article again and alter my stance (if needed) as time allows.

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The 24/7 Speech monitor?

February 19th, 2009 2 comments

Tom had another great post today, and I thought I’d briefly throw my hat into the ring.  In essence, the question/problem is this:  In order to have any kind of order or science to the treatment of stuttering, we need to do better relative to measuring the effects of treatment.  In the past, it’s just goofy researchers (such as myself) getting PWS stutterers to sit in front of a videocamera and read something.  Doesn’t sound very valid, does it?  Well–it’s not.  For every 20 participants that I run, I can–maybe–keep 25% of them.  The simple reason is this, the stutterers aren’t stuttering in the control condition.

Put a stutterer in front of a videocamera, and they know what to do.  Not stutter.

So people are trying to improve upon this by having research assisstants calling particiapnts on the phone at random, or some other kind of random assessment.  If you stutter, you’re chuckling right now.  You konw what to do when your speech therapist calls you!  You turn on your tools and tricks, and you turn it to 11.

The only way to measure stuttering is to do it all the time.  24/7.  Measure so much that you forget your being measured.  Measure so often that it continues to measure of any time, people, evnironment.

The problem is this:  While this is what we need to be shooting for, it’s functioally impossible.  Here’s why:

1.  We can’t even define stuttering.  Neither the act of stuttering, nor the phenomenon itself.  So if you can’t define something, you most certainly can’t measure it with any kind of decent internal validity.

2.  Even if we try and operationally define it (i.e., say, “for the sake of argument, it’s…”), it still cannot be measured.  Stuttering cannot be counted.  In a very real sense, it’s felt–or experienced.  The phenomenon of subpercetual stuttering (moments where there is a loss of control that is not audibly picked up) are only known to the speaker.  And as such, it is subjective and experiential; and thus, cannot be empirically quantified.

As much as I hate to say it, when it comes to stuttering, we don’t know jack about jack.  I still love doing my research, but the whole point of Stuttering.me is to aid people as best I can with the current tools available and continue to fly in a holding pattern until there’s a breakthrough.

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