Saturday, January 30, 2010

The faces of stuttering

My name is Peter Louw. I am an ex-patient and unashamed admirer of Dr Martin F Schwartz, of the National Center for Stuttering in New York (www.stuttering.com) who believes that stuttering is the learned result of the vocal folds' hypersensitivity to stress in 1 - 2% of people. Maybe he, too, is a crackpot, but I have been doing his Passive Airflow Technique for 30 years and it has helped me much. Presently I am developing a blog on this issue at http://stuttersense.blogspot.com. Looking forward to more of your stimulating blogs. Keep up the good work!

Friday, January 29, 2010

Deryk conquering the stuttering wildness



I had a Skype chat with Deryk Beal, researcher in stuttering and soon-a-PhD, at Luc de Nil's group in Toronto. We talked about his research on auditory involvement in stuttering. That's how scientific debates are done! See also my chat with Per. If any other researchers wants to undergo interrogation, let me know!

TSB: Hi Deryk! Thanks for your time and admitting to the stuttering community that you read my blog! You are about to finish your PhD on stuttering. What's the topic?

Deryk:  Hi Tom! My doctoral dissertation explored the potential involvement of auditory processing differences in stuttering in both adults and children who stutter.

TSB:  So is the auditory region different in people who stutter?

Deryk:  A straight forward question. Unfortunately, the answer is not straight forward.

TSB:  Why not?

Deryk:  Behavioural, neuroanatomical and neurophysiological studies point to potential differences in the auditory regions of people who stutter.

TSB:  So is that rather a cause of stuttering or a consequence of stuttering (like living next to a noisy motorway) or is that kids with a weak auditory system are more likely not to recover?

Deryk:  I believe that there is an emerging pattern in the data, both published and unpublished (from my supervisor's laboratory and others), to suggest that children who stutter may have

The illusion of brain plasticity

I couldn't have said it better as this reader:
Isn't it funny. These people quote the pop-science book "The Brain the Changes Itself" as though brain plasticity is the cure for everything. They think that just because the brain has plasticity, you can accomplish anything. One problem is that (as Tom pointed out) the brain's plasticity is not constant throughout a person's lifetime. As a little kid, I was able to learn a language effortlessly and without an accent. I'm trying to learn a language at the moment and it is very very difficult, and I have an accent. The speech/language areas of the adult brain are much less plastic than those of a child. Brain plasticity has its limitations, but Bodenhamer will have us believe otherwise.
Also, even though the cortex does indeed have impressive plasticity, the brain has parts other than the cortex. Some believe that cause of stuttering may be in the subcortical parts of the brain (e.g. the amygdala), and it has been shown that these areas are significantly less "plastic" than the cortex.

Thursday, January 28, 2010

Bodehamer at his crackpot best!


I was not happy to read the article Bob Bodenhamer - creating mental pathways on the BSA website . Let me dissect the different statements and show how empty and crackpot-like they are.
The guest speaker at our August 2009 conference call was Bob Bodenhamer, who is a Neuro-Semantics practitioner in the United States.
Meaning he has no real professional qualification in speech and language, psychology or psychotherapy. He cannot even claim that he is a stutterer and has first hand experiences. I always say that we should look at the quality of the arguments put forward and not the proposer, but these are weak, too.
He talked about the possibility of installing new networks in the brain to help fluency.
What exactly are "installing new networks in the brain"? The brain has many neurons. Most from birth and the number generally decreases quickly in childhood by a process called pruning. What he probably means is that you need to learn something new. What a revelation! There is nothing new in this statement: good old learning? It is just pseudo-scientifically embellished language. And he does not even understand the meaning of neural networks. Neural networks are groups of neurons which learn by changing the strength of the connections. There are NO new networks. The networks we have in the brain are mostly set by our genes.
Bob said that new information placed a great deal of credibility on the ability of the brain to learn new information throughout life. For the person who stammers, there was the very real possibility that, through a lot of imaginative repetitive thought, he or she can install new neural networks for fluency as opposed to the old neural networks for stammering.
Again, what's new? Everyone knows that we can learn new things, but it gets on average more difficult as we

The letter the Telegraph didn't want to publish

Here is the letter, that did not get published by the Telegraph, from the British Stammering Association on Daily Telegraph columnist Miss Insensitive Liz Hunt making fun of stuttering. (Oh did I mention she was headhunted from the Daily Mail, and I have to say that shows well.)
Dear Sir/Madam

I write with regard to the Comment published in today’s Telegraph by Liz Hunt.

Ms Hunt comments on Ed Balls’ ‘tear-jerking’ interview about his life-long struggle with stammering. We here at the British Stammering Association were delighted that Mr Balls publicly commented on his struggle to speak. Stammering affects almost half a million adults in the UK. Far too often, it is hidden and silent as people do not wish to be associated with it in public, often because they see it as something shameful.

This is no doubt due to attitudes to stammering demonstrated by Ms Hunt’s “Bbbballs” outburst, something which is all too reminiscent of, and on a similar intellectual level as, much of the school yard bullying that children who stammer still experience daily. I wonder if Ms Hunt is just as keen to mock other disabilities – how about people with cerebral palsy in wheelchairs: are they, too, fair game for Ms Hunt’s pen?

We thank Ed Balls for his courage in standing up to such taunts; and for showing us that stammering is no bar to communication – just as fluent speech, or access to a keyboard, does not necessarily equate to good communication skills.

Norbert Lieckfeldt
Chief Executive
British Stammering Association

Wednesday, January 27, 2010

Condemn Telegraph columnist Liz Hunt for making fun of stuttering


I urge you to go to Miss Insensitive Liz Hunt's column at the Daily Telegraph and leave a comment condemning her latest post. She is making fun of stuttering by giving Ed Balls the name Bbbballs for revealing that he was stuttering as a kid. She might well consider the possibility that Labour politician Balls is doing his outing for political reasons, but there is no reason to make fun of stuttering in such a way. Hunt sends the message that it is OK to make fun of stuttering. If she can, why shouldn't kids and teenagers do so to their stuttering school mates? They shouldn't of course and nor should Miss Insensitive.

Just imagine anyone would write:

"Blunkett is blind in all respects to other people's concern". (a former Labour minister was blind)

"Brown has an one-eyed view on politics". (the UK prime minister is blind on one eye.)

She would never do that, but yet again it is OK  to make fun of stuttering. Shame on you! I just had a look at your picture. You seem to be getting a bit older: Not in your primes anymore, are we? Maybe we can give you a nickname like Wrinkly Liz, Has-to-hunt-now Liz, Cellulite Liz. How would that make you feel? Are you now turning into Miss Sensitive?

Become a follower

I would be grateful if you show support for my blogging by becoming a Follower. See the right border with all those pictures! It is nice to have a face of those reading the blog or at least an icon if you are too scared to be identified as a TheStutteringBrain reader! For those stutterers who do not want to out themselves, and for those clinicians who are fearful of their further career! ;-)

It is easy: Just click FOLLOW, and log into your account. They offer several options, Google, Yahoo or Twitter, or an Open ID accounts. And remember that kind of support is much cheaper than actually donating some money for allowing me to attend conferences! ;-)

Monday, January 25, 2010

Extreme blushing and stuttering

A reader, Diogo from Portugal, makes me aware of similarities between extreme blushing and stuttering:

I don't know if you're aware of a medical condition called Idiopathic Craniofacial Erythema, it is the technical name for a extreme condition of blushing. I don't know if anybody made the connection  between stuttering and ICE (I searched the web but didn't find anything) but it seems to me that both share some common traits. If you dont know anything about this I advise to read the wikipedia entry (http://en.wikipedia.org/wiki/Idiopathic_craniofacial_erythema) and most of all this New Yorker article called "Crimson Tide" (http://www.angelfire.com/journal2/sadhelp/nym.htm). The article is about someone with Idiopathic Craniofacial Erythema and many things that this person feels about her condition are very, very similar to stuttering. Also how her doctors deal with her problem is very similar how different doctors try to treat a stuttering condition.

Idiopathic Craniofacial Erythema has a treatment and this treatment is an operation that shuts down the blushing mechanism. Unfortunate the same can't be done for stuttering, the equivalent would be to shut down the talking mechanism (then you wouldn't stutter but you wouldn't talk either). We can live without blushing but living without talking it is very difficult.

It seems to me that both conditions are some kind of a rare hypersensitivity to stress. We all blush and we all stutter. But in some of us the blushing mechanism and speaking mechanism are much more sensible to stress variations leading to ICE and stuttering. I would say it is a biological flaw that it is later emphasized by psychological and social conditions.  

Nevertheless I think that a correlation can be made between these two conditions (perhaps there might be other similar conditions) and by studying them together perhaps some new conclusions can be made about how do they appear, how they work and how can they be corrected (if they can).

Sunday, January 24, 2010

Pagoclone: puzzling report.

A reader has sent me a first-person report on his Pagoclone trial experience. I am very puzzled by his doctor's comments. Here is his report:
I received an invitation to be part of the next Pagoclone Phase IIb trial last March and started on April 15th. As you know the Phase IIb was to be a double blind study whereby they would also be trying several different doses, .15mg, .30mg, and .60mg all twice a day. I believe that I was on Pagoclone for the majority of the study and came off of Pagoclone and went on the Placebo at least at the very end of the study to properly transition to the Open Label Phase that I am currently on. I truly believe that the medication works. I do believe that I experienced a modest improvement in my fluency, somewhere around maybe 40% better fluency, and then after the dosage change, back to the placebo, I experienced a pretty dramatic drop in fluency to almost pre-study levels. I have not had any problems with side effects, at least none that I am aware of, blood work might show something, etc. However, over the course of the study, I have gained five pounds, but I believe that can be attributed to my horrible diet over the last year....

At my visit on Tuesday with the clinic, the Doctor asked me to describe how the medication works. I explained to him that I feel it reduces the stress, tension and pressure in the articulators (lips, mouth and jaw) which allows for a free flow of speech, or a much more free flow of speech. There is still room for improvement, even on the highest dose, which I am on now, .60mg. I am not aware why they are stopping at .60mg. Why not double it? or Triple it?
The doctor that is over the clinic, that I meet with every visit, had some pretty candid information for me. He said that the results that he has seen over the last year indicate to him that the medication works in about 2/3rds of the participants and of those 2/3rds that it works on, it has the most dramatic effect on the highest dose (similar to my experience). He also stated that most people do not have much, if any, reaction to the drug and he called it a fairly benign drug.
I asked him when we would know the results from Phase IIb and he said that he's surprised that they have not reported on it yet. I also asked him to peer into his crystal ball and predict for me what the final outcome will be relative to the future of Pagoclone. He said that he believes that it has a better than 50/50 chance of ultimately being approved. He said that his typical response for the other drugs that they test for is, "it's a 50/50 chance". He stated that because of its benign nature, the efficacy of the drug and the fact that it meets an unmet need, concludes him to think that it will have a greater chance of being approved than not being approved.
I am very puzzled by his doctor's comments, if correctly reported and understood. How can the doctor know that the medication works for 2/3rd of the participants if he doesn't know who gets what? After all, it's a double blind trial. And how does he know that it's most effective on the highest dose? Either the participant has misunderstood, the doctor has mis-thought, or the blind has been broken somehow (which I do not believe.)

Friday, January 22, 2010

Petition ASHA for fairer marketing!

If you wish to sign the petition, please send an email to Peter Reitzes, MA CCC-SLP - preitzes@yahoo.com. Please include your name and credentials exactly as you wish them to appear on the petition.

If you want more information on this topic, the issues were discussed in detail during the StutterTalk podcast, episode 173. In the notes of that episode are many pertinent links.

Please feel free to share the petition with your colleagues and others who may be interested in signing the petition.

Thank you for your consideration,

Peter Reitzes, MA CCC-SLP
Co-host, StutterTalk.com podcast
---------------

David R. Denton, JD, MA, CCC-SLP, ASHA Fellow
Director of Ethics
American Speech-Language-Hearing Association (ASHA)
2200 Research Blvd., Mail Stop #309
Rockville, MD   20850-3289

PETITION


We, the signatories, petition the American Speech-Language-Hearing Association (ASHA) to rigorously enforce compliance to its self-imposed Code of Ethics. In the preamble to ASHA’s Code of Ethics, the organization states that “The preservation of the highest standards of integrity and ethical principles is

My 2010 outlook on StutterTalk

I have been chatting to Peter and Eric on StutterTalk about my predictions for 2010 and more.

My predictions are:
1. Pagoclone Phase IIb results will come out: moderate or no effect for some, and none for many.
2. The baseline of the control group will give us a unique view to the size of the measurement bias.
3. Hopefully finally some news from Drayna's genetics group on a specific gene causing stuttering in some families. (He hasn't published an article on stuttering since 2005! See PubMed.)
4. First results from Franken's early childhood intervention trial: Lidcombe vs Demands & Capacities.
5. Skeptical on the brain imaging front. The easy stuff has been done and has hit the complexity wall.

And again, I am not happy by the way I spoke. It's the third time on StutterTalk, and I told myself to speak slower and make more pauses. And I failed again. There is not reason for me to speak like this. It is also amazing that I shift from very fluent phases to very dysfluent phases.

Monday, January 18, 2010

Newton: talked much and pleasantly


I dug into some 300-year old historical documents on Newton: the memoirs of William Stukeley, a good friend of Newton. Here is what the Gentleman has to say about Sir Isaac on meeting some Lincolshire fellow countrymen:
Sir Isaac enjoy'd himself extremely in this society of his countrymen; & talkd much, & pleasantly. particularly I remember one part of the conversation turn'd upon musick, of which Sir Isaac was fond;
Newton was "talking much and pleasantly". Does not sound much like a description of someone who stutters? He certainly seems to like talking. And here is more of Sir Isaac speaking:
Sir Isaac; who remain'd some time with us. & no joy could equal that which I took, in seeing the great man, of whom we had imbibed so high an idea, from being conversant in his works.

 I often visited him, sometime with Dr. Mead, Dr. Halley, or Dr. Brook Taylor, Mr W. Jones or Mr Folkes & others. sometime alone; and we discoursd upon divers curious matters, as well as on country news:

 I was delighted to observe, Sir Godfry, who was not famous for sentiments of religion, sifting Sir Isaac, to find out his notions on that head; who answerd him, with his usual modesty, & caution.
I didn't manage to read the whole text, but no indication of Newton stuttering.

Isham stuttered as a teenager.



OK. I feel a bit guilty for having robbed you of Isaac Newton as being a stutterer. And you won't accept me even as a good Newton substitute though I do stutter and I have a PhD in theoretical physics! Here is a compromise. A confirmed semi-famous recovered stutterer. It's Professor Chris Isham: standing next to Hawking. He is a well-known professor in theoretical physics for his work on quantum gravity and quantum mechanics, where he among others things introduced new mathematical concepts and showed that under certain circumstances time is not fundamental to certain physical theories. He is considered as the the Imperial College analogue of Cambridge's StephenHawking, and Oxford's Roger Penrose.

He was the supervisor of my Master thesis on a new framework for quantum mechanics. And he told me that he was also stuttering, but only as a child or teenager. And then I asked him: So what did you do? He said that his teacher made him read in front of the class every day (I think), and then it got slowly better. And I said: That's it? Are you sure that's what made it go away? As far as I remember, he replied: I don't know. Maybe I was just more lucky than you.

They all seem to recover just like that. Why not me? Why not you? Why them?

Sunday, January 17, 2010

Conflict of interests at ASHA

Peter Reitzes dug out some very interesting facts which suggests significant conflict of interests at ASHA. Here is the text from their website:
During today's episode Peter Reitzes and Eric Jackson discuss our thoughts and concerns regarding the LinguiSystems "Outcomes Guaranteed" statement and "Guaranteed Outcomes." We discuss our strong concerns regarding the American Speech-Language-Hearing Association's initial response and urge ASHA to look closely at its Code of Ethics. We discuss the financial aspects of this situation and strongly urge ASHA to voluntarily and proactively look into such matters and to launch investigations when necessary. A fuller show summary with links to web pages and documents discussed are available below so that listeners and the public can decide for themselves.
Peter wrote a letter to the Board of Directors of the American Speech-Language-Hearing Association which is available here at the Stuttering Brain Blog.

Friday, January 15, 2010

Is ASHA violating its Code of Ethics?


Ethical conduct, guided by a code of ethics and re-enforced by a compliance procedure, is essential for any profession. Peter Reitzes from Stutter Talk has written to the board of the American Speech and Hearing Association expressing his concerns about the guarantees made by LinguiSystems about their stuttering therapy aids.

I am especially troubled by the response attributed to ASHA:
LinguiSystems is a multi-million dollar company and that ASHA does not want to risk alienating them.
ASHA must uphold the highest professional standards, which dictate that the ultimate beneficiaries of a policy must be the patient. Or, are they saying that they value other interests higher than the patient's welfare? And conflicts of interests need to be fully and prominently disclosed in an easily understandable manner.

Here is Peter's letter.
January 15, 2010

ASHA Board of Directors:

As a member of the American Speech-Language-Hearing Association (ASHA) and DIV4 (Division 4, Fluency and Fluency Disorders) and as a co-host of the StutterTalk podcast, I want to share some concerns I have regarding the LinguiSystems website and how materials are being promoted by claiming they are “guaranteed to work.” (http://www.linguisystems.com/outcomes.php)
LinguiSystems' co-owners, Linda Bowers and Rosemary Huisingh, are both speech-language pathologists and ASHA members and are therefore bound by our ASHA Code of Ethics.

Analogy: Trigger and cause


I am still debating with Michael Mills on his crackpot award for saying that stuttering is caused by social anxiety. He keeps on repeating that stutterers do not stutter when alone and therefore stuttering must be caused by social anxiety. Here is an analogy on the logical fallacy.

Issue:
The car makes strange noises when traveling at high speed.

Your reasoning:
It is a proven fact that when the car travels at low speed there is no strange noise. So the cause of the strange noise is the high traveling speed. So my treatment is to make sure that the car does not travel at high speed.

My reasoning:
Yes, the noise happens at high speed. However, the real reason is not the high speed, but, for example, the engine that does not work well at high speeds. So, yes, one approach is to just ignore the faulty engine and only travel at lower speed, but the engine is still working badly. And don't tell me that the high speed is the actual cause of the noise. It is just a trigger to expose the faulty engine. Another approach is to repair the engine, if possible of course, and then you can travel at ANY speed like all normally functioning cars do. Of course, if you can't repair the engine because it is old, driving at lower speeds is fine by me as a treatment, but not as an explanation of cause.

Thursday, January 14, 2010

International Gathering in Buenos Aires in 2011?

Can one of my spies please let me know what is going on with the Facebook Group: International Gathering for People Who Stutter - Argentina 2011. Who is Jeffery Cane? Does this clash with the 9th ISA conference held in May 2011 in Buenos Aires, Argentina? Why did he put pictures from the last ISA conference on but called it international gathering in Buenos Aires?

Argentina will be hosting a giant 5 day party in Buenos Aires in May 2011 to bring people together who stutter or are interested in stuttering from all over the world to discuss stuttering treatment and support and generally have a wild and fun time meeting each other. Join this group if you are interested in being part of it and we will keep you up to date with all the details.

Wednesday, January 13, 2010

Who can we trust?

I had a look at well-known web pages, and most have propagated the Isaac Newton urban legend. My question to you and to them is: How can we trust you on other information if you just copy information like parrots?

Judy Kuster's well-known and respected website lists Newton. And took over a picture from Darrell Dodge at Veils of Stuttering that includes Newton, and Dodge writes:
Isaac Newton asked that the windows of Parliament be closed so the public wouldn't hear his stuttering.

Disabled world writes:
Sir Isaac Newton - (4 January 1643 – 31 March 1727) A very important scientist who is responsibe for founding the three laws of motion along with studies concerning Universal Gravitation. He studied many scientific disciplines but mainly stayed inside the field of mechanics. It is said that Newton had mainly discovered gravity by examining a falling apple, that would have been one of the major reasons for him to start his researches in the subject. Was thought by many a product of psychosis but he may just have been in his right mind. Isaac Newton once asked that the windows of Parliament be closed so the public wouldn't hear his stuttering
This description is just so wrong, also in the physics. He actually also co-developed calculus, a key area of

Tuesday, January 12, 2010

Newton: no stutterer!



So Newton is a stutterer, according to Stuttered Speech Syndrome, Veil of Stuttering, and others.
Isaac Newton asked that the windows of Parliament be closed so the public wouldn't hear his stuttering.
Check out the picture above, and read the following quotes:

Monday, January 11, 2010

LiguiSystems guarantees the unguaranteeable!


Listen to Peter on StutterTalk and his concerns about LiguiSystems' guaranteed outcome from fluency aids. He wonders what should be done to express his concerns. And he wants to write to them and ask them to come on the show.

Here is what needs to be done! ;-) They write:
Guaranteed Outcomes
- Develop confidence and competence in your treatment of fluency disorders
- Improve clients' fluency as they evaluate and change their attitudes and beliefs and learn to use fluency enhancing strategies, self-monitoring techniques, and cognitive/self-instructional strategies
Guaranteed Outcomes
- Develop coping, cognitive, motor, and social strategies
- Speak confidently
- Deal with reactions to stuttering and reduce physical manifestations
I write:

Yet again, like with Speech Easy, we have some money-greedy business people covering themselves in sheep clothes using elaborate sales and marketing techniques misleading in my opinion people who stutter and therapists (or being guilty of ignorance on stuttering, you choose). I am sure those who are responsible for sales and marketing will read these lines. Here is my message to you:

You should be ashamed of yourself for using those sales tools to hook people on your products. You are giving them false promises and hopes. I know. I know. You are telling me that your text is not actually doing that. What a lame excuse! Yes you are completely right. But one needs to have a f***ing PhD, a lawyer eduction, and one hour of concentrated thinking to realize this. You know exactly that the average mind just registers "Guaranteed", "evidence", "supported by". You know that. Again, you should be ashamed of yourself for making money that way. Do you really have to use these kind of tricks? Do you really need to do this kind of work? Can you not do something else and just buy 2 shoes per year instead of 3?

Sunday, January 10, 2010

Proximate and Ultimate causation

I need to clarify the concept of cause as confusion reigns among many readers. Check out this wiki page on Proximate and Ultimate causation.

Harry asks a sensible question:
You say :
"Let me be crystal clear. I certainly view social anxiety as a consequence of stuttering and not the cause of stuttering."

...and then late add :

"There is no doubt in my mind that the shame and fear associated constitutes a significant part of the psychological and social handicap that we experience and modulates the frequency and severity of stuttering events."

Isn't this a contradiction? So, the fear and shame modulate the frequency of our stuttering, and yet you do not beleive that it is the cause?
Surely, it causes some of the stuttering. Take away the fear or shame (eg. when we speak to an animal, or a baby, or to ourselves), and most of the stuttering disappears.

The ultimate cause is the neurobiological deficiency, because:

1) Without the neurobiological deficiency, we would never have started stuttering in the first place. (which creates mal-adaptation of learned behaviours and unhelpful beliefs.)

2) Without the neurobiological deficiency, we would have far less difficulties controlling our speech fluency in a demanding speaking situation. (which makes it difficult to unlearn learned behaviours and change unhelpful beliefs.)

A proximate cause is the learned behaviours and beliefs, because they modulate stuttering.

A good analogy is:
Example: Why did the ship sink?
o Proximate cause: Because it was holed beneath the waterline, water entered the hull and the ship became denser than the water which supported it, so it couldn't stay afloat.
o Ultimate cause: Because the ship hit a rock which tore open the hole in the ship's hull.

Saturday, January 09, 2010

Social Anxiety oil on neurobio fire


The Australians have taken up Social anxiety & Stuttering. The Onslow group, and the Craig group have written paper on the topic. And I believe that their work on the social anxiety aspect of stuttering is very important, especially in the treatment of people who stutter.

Let me be crystal clear. I certainly view social anxiety as a consequence of stuttering and not the cause of stuttering. And the source of our abnormally high level of social anxiety is not neurobiological like for many people with social anxiety disorder.We instead have built up belief systems about stuttering and individually learned memories to stuttering events that led many to suffer social anxiety related to their stuttering. There is no doubt in my mind that the shame and fear associated constitutes a significant part of the psychological and social handicap that we experience and modulates the frequency and severity of stuttering events.

The good news about social anxiety is that you can get rid of most of them,

What I accept or not.

I accept

1. I have a neurobiological abnormality affecting my speech systems leading to a propensity to stutter.
2. I  have to live with my abnormality for the rest of my life. (as far as we know today).
3. I have to work on myself if I want to improve my speech fluency.
4. I have to work on myself if I want to minimize the psychological and social consequences of stuttering.
4. shame, beliefs and most fears I held or experienced were completely unnecessary and harmful.
5. stuttering had some positive effect in that I was forced to take a deeper look at myself.
6. moderate to severe stuttering can be a burden to others who listen to me that I should minimize.
7. some jobs that strongly focus on fluent verbal expression are not for moderate or severe stutterers.

I do not accept

1. the way that I speak as desirable to myself or others.
2. stuttering is a gift.
3. stuttering is only a handicap if you perceive this to be a handicap.
4. the excuse of therapists that their therapy only failed because I/we did not try hard enough.
5. stuttering is a part of me that I should love, too.
6. people who stutter no matter how much they stutter cannot do jobs involving a lot of communication.
7. people who stutter are severely hindered by stuttering to have a successful life and career.

Friday, January 08, 2010

Meeting of Luxembourg-based stutterers


On Tuesday evening, I had invited six fellow stutterers to my flat for a few hours of social bonding, discussions, and sharing experiences. All this would not have been possible without Doodle. This cool website allows you to find a common date and time that fits most people. I tried to organise meetings before but it was a complete nightmare and I could never get them all together. I love doodle: just a simple idea.
One girl who attended told us how she refused to go to school at the age of 14 or 15, and then never went back! She is now attending evening classes and will do her high school degree soon. And she is scared of the oral exams. We all tried to encourage her, mainly by referring to our own experiences. Nearly everyone told the story of them counting the minutes to the school bell. At least in Luxembourg, we do exercises row by row, and so you can develop a prediction model of whether you still have to say something or not. I worked out the average time it would take to do one exercise per student and then multiply this time with the number of students

Anecdotes on Pagoclone.

Yet another unscientific anecdote on a Pagoclone trial participant:

Hi Folks,

I completed my full year of double blind study 4 days ago. I'm 80% sure that I was on placebo the entire full year.

3 days ago I started open label, I noticed a great amount of improvement of flow in day 2. Today I can feel it even more. Even though my 1st bottle is a pretty low dose, I'm waiting for week 2 so that I can go on to a high dose - it seems to be working.

That free flow of thought is weird, for those that have seen the youtube video of the guy explaining how it works - yes it actually does feel weird.

Also anxiety has lowered for me. I've always had a anxiety problem.

I'll continue on as I go along more.

Placebo? Or Pagoclone-induced effect? Effect because the brain system gets off balance, feels differently, strong placebo kicks in because people assume the substance is working and more fluency follows, but this will go away after the brain re-adjusts? Effect due to reduction of anxiety that increases the trigger frequency of stuttering events? Effect because it helps the speech systems themselves?

Different answers for different people? How can find out? Will the measurement problems affect the results? How about long-term fluency? Does Pagoclone help to stabilise patient so they can do behavioural treatment?

Monday, January 04, 2010

Visits 2009



I had 76'000 visitors this year compared to 54'000 visitors last year. I do not expect any major increases (without putting much more effort into the blog), especially because my blog does not deal with more main stream issues like StutterTalk does. The readership is getting settled more or less. However, I expect a jump in 2010, because the Pagoclone Phase IIb results are coming out and my site will have more traffic. You can see this from the top posts last year. Pagoclone is very much the top interest of readers: the hope for more fluency without more work or self-reflection! Also, if you google Pagoclone, TheStutteringBrain is close to the top. So the day the news will break, many people will click on my blog.

/2009/01/pagoclone-trial-start-in-march.html 498
/2009/05/your-question-pagoclone.html 339
/2009/01/why-sudden-onset.html 134
/2009/02/interview-with-jerry-maguire-on.html 88
/2009/03/stuttering-brain-disorder.html 86
/2009_11_01_archive.html 83
/search/label/Crackpots and Fallacies 72
/2009/01/how-janus-of-speecheasy-is-misleading.html 71
/search/label/Medication 70
/2009/10/pagoclone-trial-finished.html 67
/2009/04/oprah-winfrey-should-be-ashamed.html 61
/2009/11/fluke-or-side-effect.html 60