Wednesday, December 23, 2009

Happy Xmas!



After a year of fighting crackpots, logical fallacies, pompous claims, a few loopy commentators, my ego and my stuttering, lets have a truce for a few days. I am looking forward to more fighting next year!

My reply to Leys' reply

Here is my reply on Leys' reply on my post of him being sloppy on science:

On the first point, I am thinking of Kate Watkins et al who, on the 10th of October, 2007, published the following in Brain: 'Our data support the conclusion that stuttering is a disorder related primarily to disruption in the cortical and subcortical neural systems supporting the selection, initiation and execution of motor sequences necessary for fluent speech production'. I accept, as do most other people, that many other factors contribute, particularly as time goes by, and these can turn stammering into a kind of syndrome. But none of that detracts from the view that the ROOT CAUSE of stammering is a neurological condition, a kind of faulty wiring in the brain.

As I wrote, I do not disagree about there being an underlying neurobiological issue, but you exclusively talked about the neurological aspect. However, stuttering symptoms are so diverse and fluctuate significantly that a pure neurological explanation is not enough. Moreover, cognitive beliefs and social anxiety make up a great part of the handicap. Watkins or any other neuroscientist have not explained the symptoms of stuttering. My

Prestigious clinical meeting in May


TheStutteringBrain keeps you up-to-date. A few readers made me aware of a symposium happening on May 22-24th in Crotia. According to the author of the email announcing the meeting: we are shaping up to have the most productive and prestigious clinical meeting in the field for some time Anyone wanne guess whose style of writing that is? ;-)

If you are a clinician and not invited, here is the list of connected clinicians and non-clinicians important enough to count as clinicians that were invited:
To:jsyaruss@pitt.edu; deborah.kully@ualberta.ca; marilyn.langevin@ualberta.ca; S.Block@latrobe.edu.au; admin@stuttering.org; jarmson@dal.ca; tsaltukl@utk.edu; John.VanBorsel@UGent.be; Michael.Blomgren@health.utah.edu; executivedirector@stuttering.com; bpryan@csulb.edu; c.andrews@usyd.edu.au; n.trajkovski@usyd.edu.au; rosalee.shenker@mcgill.ca; sarita.koushik@gmail.com; m.lincoln@usyd.edu.au; Chris.Lewis2@health.wa.gov.au; brendacarey@bigpond.com; abothe@uga.edu; Jason.Davidow@hofstra.edu; melissa.bray@uconn.edu; thomas.kehle@uconn.edu; ashleycraig@med.usyd.edu.au; Sally.Hewat@newcastle.edu.au; m.franken@erasmusmc.nl; attanasioj@mail.montclair.edu; per.alm@neuro.uu.se; Cook, Frances; Norbert Lieckfeldt; rossmenzies@ozemail.com.au; Ross Menzies; Sue Obrian; Millard, Sharon; Nicholas, Alison Cc: Jasmine Katakos; Suzana Jelčić Jaksic

Michael Mills

Mills' response to his Crackpot Award shows how ignorant he is about the science behind stuttering. He is treating people who stutter, and he should at the very least be up-to-date with the current understanding on stuttering.

stutterers do not block when speaking out loud alone in a room - that is an objective fact - it is true for all the thousands of people who stutter that I have come into contact with - and it is true for all the fluent speakers who, when asked to give a public speech, panic (i.e. alone in a room they can give a great speech - but when giving the same speech in front of people they panic and block) - why is it so? Alone in a room fluent - explain it in other terms apart from social panic - that is your challenge - if you have the courage for it - or are you going to revert to your evasions of attacking the person rather than debating the concept
You are mixing two things here: the observation that stutterers have few blocks when alone, and the interpretation of this observation. Your interpretation (1) is that social panic causes the block, because that is what we sometimes see in other people. And further you say that this developed in childhood due to bad

Monday, December 21, 2009

Per Alm: Battle of The Stuttering Brains

Here is an edited transcript of a Skype debate I had with Per Alm: click on Read More below to read all! That is a good scientific debate for me, much like the debates that I had and am having with friends who are top scientists at top universities, and very unlike what you hear at most stuttering conferences. There you hear buzz words, parroting, self-congratulations, no talk about weaknesses of own models or mistakes, consensus-seeking, and lots of pseudo-scientific bla bla bla.

Tom: There are two issues in stuttering in my view
Tom: 1) to obtain an overall framework within to fit the disorder
Tom: 2) to look at what goes wrong in a specific individual from gene to symptoms.
Tom: your focus is on 2)
Per: And 3 -- what to do about it.
Tom: ok... that's too real-life for me :-)
Per: my main focus is on 1 but in that work I also look at 2, because the empirical data is in 2 (but also on clinical implications)

Thursday, December 17, 2009

Dual-tasks misconception

Chris writes:
I've stuttered for 26 years and I don't believe that the ability to do dual tasks at once is my problem. I can do two tasks at once. Matter of fact, I can usually speak better when my mind is preoccupied prior to speaking.

You may be onto something. I'm not sure the cause of stuttering, but I know it is a combination of physical and mental dimensions.

You misinterpreted the evidence. It seems as if people who stutter as a group perform worse than fluent speakers. It is an inferior average performance. We can of course perform dual tasks, but on average we might be worse. And you could well be better than many fluent speakers. Also it is mainly on motor tasks. And an inferior performance might not be the cause for stuttering at all. Might well be that the brain wiring is suboptimal leading to suboptimal speech and dual-task performances.

I agree with the combination of physical and mental dimensions. But I would add that there are two types of "mental dimensions": cognitive like beliefs and individually learned like associations.

Wednesday, December 16, 2009

Dead stuttering blogsphere


Not much is happening in the stuttering blogosphere. TheStutteringBrain has fewer posts lately, and not that interesting ones. ;-) StutterTalk seems to be talking more to themselves as an answering phone message that repeats over and over again. StutteringHub is gone more or less silent. Greg at Stuttering.Me hasn't posted for weeks.

Physiological vs psychological

A reader asks a sensible question:

Those guys said "... speech blocking is not a physiological problem, but a psychological ...", and you disagree.

The header says "Stuttering is psychological".

Fair enough, but perhaps you can answer a question for me. What is the difference between a physiological disorder and a psychological disorder? I'm not trying to be argumentative just for the sake of it; I'm just interested in your answer.

Physiological is about the functioning of the neurobiology of the brain. And psychological is about everything

Tuesday, December 15, 2009

Leys Geddes: Sloppy on science

Working on science of stuttering sometimes drives me insane. One hour ago, I had to give a crackpot award to a website that has not clue about stuttering and assumes stuttering is purely psychological. And, then when I was done with the psychos, the neuros needed to be corrected.

Leys Geddes, Chair of the British Stammering Association, writes in Speaking Out:
There are two main things that people need to know: firstly, that the root cause of stammering is a neurological condition, a kind of faulty wiring in the brain, which makes it very difficult for us to control our speech and speak fluently.
In itself, the sentence is probably correct to a first order approximation. However, misleading when considering stuttering as a whole. It's too neuro, and psychos understandably disagree. A lot of stuttering behaviour is learned, re-enforced, and kept alive by an underlying neurological issue. I would even argue that a stuttering event is often not due to the neurology at that precise moment but environmental or internal stimuli triggering stuttering behaviour. And controlling stuttering will mostly involved changing the cognitive behavioural aspects rather than the neuro.

And secondly, that Early Intervention is particularly effective for very young children - because that faulty wiring has not yet kind of hardened up. So, if they are seen by a speech therapist, who is qualified in paediatric stammering, there is about a nine out of ten chance that those at risk of a lifetime of stammering will recover.

There is no evidence for any of the statements:

1) particularly effective? There is no hard evidence for full recovery of any child who would have recovered anyway. No-one ever reads the follow-up study of the flawed Lidcombe study: Three of the children (16%) who had completed treatment successfully had relapsed after 2 or more years of speech that was below 1% syllables stuttered. That's about the recovery rate! Again there is no clear evidence for full recovery. But you could argue that those who would not have recovered anyway have lighter stuttering symptoms. Fine but no cures proven as far as I see. No magic happening.

2) It is not even clear that the natural recoverers ever were at risk of developing stuttering. They might well have recovered anyway and just suffered from temporary stuttering due to a temporary developmental mismatch.

3) And this "faulty wiring not having hardened up" is Alice in Wonderland stuff. The stuff that makes us dream. A messed up brain is a messed up brain, and at best can the brain compensate so that it bypasses the messed up area or optimizes in and outputs and behaves fine overtly.

Monday, December 14, 2009

Crackpot Award for the Gimstedts



I am happy to announce yet another Crackpot Award. Douze points pour la Suede. For Lars and Hildigerdur Gimstedt on Psykosyntes. A special mention goes to Lars Gimstedt. He cannot even claim naivety for the stupid claims they make because he has a degree in physics! Shame on you! You didn't do any background research.

Let me de-construct what they write:

Stuttering is a learnt behavior

The speech blocking is caused by a reaction into a conditioned state in certain conditions or situations. This conditioned state is a result of learning, although sub-consciously. The state is characterized by nervousness, "mind reading" (of the presumed attitude of others), muscular tensions and spasms.

Explain me why some start stuttering and others don't. Explain why stuttering has a strong genetic component. Explain why brain imaging consistently finds differences in brain structure and functioning.

Stuttering is a psychological problem

As there in almost all cases are other states, induced by certain types of situations, where the stutterer is able to talk fluently, speech blocking is not a physiological problem, but a psychological...

Wrong. It doesn't mean that if I am not stuttering sometimes that it is not caused by a physiological underlying issue. So are you saying that because a drug addict does not consume every day, that it is purely a psychological issue. Are you saying that semi-deaf people who hear better on some day, that it is purely psychological?

To summarize, they have no clue about stuttering but offer treatment for stuttering. Extracting money from people who might be desperate to cure their stuttering. I especially despise the way how their website puts the emotional screws on people who stutter.

Please email the good news to them: mail@psykosyntesforum.se!

Memento Stuttering



Self-reflection causes pain, especially when focusing on not-so-wanted aspects of one's behaviour. Let me look at what I am doing when I stutter. Dave Rowley's pictures during my guest lectures are a good example. I really hate to see those pictures, and would like to dig them away very deep. However, that would mean that the behaviours are controlling me, my digging that is. I am reminded of the Capucin Crypt monks' Memento Mori in Rome: see here, too. They dug out the bones of their dead fellow monks and decorated a whole crypt and cellars with them! Bones on the walls. Bones as an altar. Monks out of bones and skull. Crosses out of bones. Looks really morbid, but great experience. Or go to the Parisian catacombs! Same thing but a bit more somber. Millions of bones and skills. It's like my monster speech. You don't have to run from them, just face them, go through a scary moment expecting certain death and they run away and you look like a fool for having run away for years.





I always close my eyes, and look down. If you have the sound on, you would probably hear. lots of fillers like ehhhh.




Again, I am closing my eyes but not looking down. I have to say that my body language with hands is still pretty good! ;-)



I am most shocked about this picture. I don't really show symptoms as such, but I look very on the edge. Note the red patch on my neck. That's blood ready to burst out at any moment. My God, isn't that a recipe for a stroke at a more advanced age?  This reminds me of a shocking comment of someone close to me: Sometimes you are in near hysteria when stuttering.

To all of those who would not dare doing what I just did and claim to have recovered, are you really? Is stuttering not taking the front seat in your life?

Sunday, December 13, 2009

Crackpot Award for StutteringInnovations





The Stuttering Brain awards the team of StutteringInnovations , especially the founder Michael Mills, for the outrageous and completely unproven claim that:
Stuttering is now defined as a 'panic attack' over speech that starts in early childhood. Stuttering does not respond well to fluency training because the person already knows how to be fluent.
Here are a few questions for our brainy crackpots:
  • Who defined stuttering like this? And based on which arguments?
  • How does genetics fit in here?
  • What about brain imaging work showing differences in young kids and adults?
  • So singing and choral reading does not trigger a panic attack?

Saturday, December 12, 2009

Conspiracy theorist and stuttering

Here is an interesting quote on conspiracy theorists that Ora has sent me. Might this apply for some theories on stuttering, too?
Conspiracy theorists typically argue indirectly. They don't pit the merits of their theory against the merits of competing theories. Instead they try to erode confidence in some "official story" to the point where it seems arbitrarily incredible, whereupon their conspiracy theory is supposed to stand as the "default" conclusion when the official story fails. The conspiracists never put the conspiracy theory "default" to the test to see whether it too make sense.

In other words, they never test their tests. The myths that were tested on the program are the basis for the conspiracy theory "rules" that purport to distinguish genuine photographs from fake ones. But before relying upon them, the conspiracy theorists never put them to the test. Their suppositions about shadow direction are wrong. Their supposition about fill lighting is wrong. In the real world, where there is no "default" conclusion and where both hypotheses are tested equally rigorously, the conspiracists' conclusions simply don't hold. They appear to hold only because the conspiracist authors manipulate the discussion to avoid a meaningful test.

Friday, December 11, 2009

Looming Deadlines Antwerp and ECSF


I have submitted a seminar proposal for the EU SYMPOSIUM FLUENCY DISORDERS 2010 at Lessius College Antwerp on April 23rd and 24th. More information here. The conference has a decent level and mixing science with clinical stuff. The key speakers reflect this good mix. I like to hear what Dennis Drayna has to say. He has been saying the same things for years now. I hope to hear some new stuff. What genes? And what are those genes doing? Come on: society pays you a lot of money! Inviting one of the key speakers was definitely a bad move; presentation-wise (very boring) and politically unwise (disliked or feared by many, he seems to quarrel with everyone).

If you are from overseas, consider Luxembourg on your road trip. Not too far by car!

I want to talk about a framework NDC2 I have been developing to incorporate the multi-causal and multi-dimensional nature of stuttering. I am applying NDC2 to give a possible explanation for natural recovery in child.

If you are interested in a specialization course on fluency disorders. Here are more details. Again Kurt Eggers is coordinating.
Call for application ECSF-specialization course 2010-2011:
Registration for the 2010-2011 course is open and applications are taken chronologically.
More information here.

Wednesday, December 09, 2009

Guest Lectures at de Montfort University


I am back from London from attending the Downing Street reception on the invitation of Sarah Brown, wife of prime minister Gordon Brown, for the British Stammering Association. I also had business meetings, and met up with a friend who is a reader at London School of Economic.

On Wednesday I got the train to Leicester to give two guest lectures related to stuttering: one on evidence based practise, and the other one of the framework I am developing for stuttering. Dave Rowley is a lecturer there and was head of department. Many staff members were there, and only a handful of students, even though he organized the talks for theem! I was stuttering rather severely. More than at the BSA conference when giving the talks in front of more people, and in general. Maybe I am more scared of academics than stutterers? God knows, and if he doesn't even exist as Richard Dawkins suggests, I am in trouble. The return train ride was 60 pounds. Trains are ridiculously expensive in England, a good example that blind privatization can lead to disasters, but I am getting my expenses paid, in some years probably.

Dave gave me a brief sightseeing tour. The most striking of the ancient English city of Leicester is the many non-English faces. There are many Pakistanis living there, and shockingly many with strict head covers.

I showed Dave how my framework gives a possible explanation for natural recovery in children who stutter. I am currently preparing a submission proposal for the Antwerp conference next year (see link in the right border) to present the framework.

Wednesday, December 02, 2009

An interesting evening in London


I just came back from a reception from a place I am not allowed to talk about. Or so I was told as it is a private occassion. Kind of unfair because the host herself has a twitter site! Had a few good chats with old and new friends about stuttering. Being re-assured by an important therapist that quantitative research is important to her, too. Had a good look at the interior of the building. Nice painting of Queeen Liz 16th century. Probably never be there again in my whole life. Went to a room I was not supposed to be in after some mind twisting. But that I can definitely not talk about! Frightening how the imagined center of power is nowhere really. Chatted to Magareth Thatcher's former cook / chef / caterer reliving her past. Luckily she stutters, too. Apparently good old Maggie was funny and flirtatious (but not to her of course). Admired the new portrait but not courageous enough to use a big black pen for a nice mustache. She looks at you from all sides. Kind of saying: "Have you paid your poll tax?" Tried to google her nice ex-chef, who is well-known as I was told but I never heard of her, and I can only find sites to "Gordon Ramsey's business is stuttering!" Witnessed members of the charity fighting like animals just to have their picture taken with a door. Now how sad it that? I'll probably post one of me, too. Just to make sure you know I was there. The smiley girl got the police officer with her on the picture. Heard a good honest speech with quite a few blocks. Yes now you know who it feels to stutter. Will you twitter about it? And a very impressive performance from someone who stuttered as a child or so he said. No wonder he became a minister. Hopefully not to close to power not to survive? Using UK diplomatic slang, stuttering is getting some well-needed traction finally. Sorry stammering that is, and no-one knows why it's called stammering. That's British culture. Distinctively stylish and full of contradictions.

Trial as of Nov2009

Jerry Maguire, chief investigator of the Pagoclone trial, was on StutterTalk.com. As I speculated, most patients from the Phase IIb trial have completed the trial period. In two months' time, all will have completed. So that would take us to the end of the year. I forgot the fact of the data being locked and the blinds only being removed once all results are in. That definitely makes sense. In a double blind trial, neither the patient nor the reseacher know which pills are placebo, i.e. a sugar pill, and which contain the to-be-tested compound. So they do not know more internally than we do. However, from the outcome measurements, they can already take averages across all participants (from high dosis to no dosis placebo). You should be able to look at the time evolution. I would predict that the outcome went positive after the first testing and then slowly declined.

Jerry expects the results in late winter. That sounds reasonable. However, do not expect a serious debate at that moment, because they will mostly likely only release a statement but not a scientific paper or the raw data (unless there is a FDA requirement to do so). Jerry also announced that the Phase IIa has now been accepted for scientific publication. The publication has taken far too long for a serious debate. Who cares about these results now? :-( The Phase IIa are presumably better controlled for loopholes and a bigger sample. The publication process in medicine is really a scandal. They should start doing pre-prints like in physics.

TEVA, an Israeli company, owns the destiny to Pagoclone, and it will be up to them to decide whether to go for an expensive Phase III trial. So what happens if Phase IIb is successful? Jerry talks about there being a Phase III before the FDA accepts Pagoclone as a stuttering medication. However, I guess you can probably get it off-label. Especially because the side effect seems to be very moderate. Peter and Eric asked about clinical significance. At what point is Pagoclone successful? 30% decrease? Or more? That's a good question. 30% is a lot for severe stutterers, but for someone who just stutters occassionally and fears such situations things won't change much!

I was struck by Jerry's subtle change of takt. He was more sober than usual about the prospects of Pagoclone. My feeling is that Pagoclone is not going to be the cure that some are looking for. Might even be a mirrage. Sorry. Jerry keeps on saying that it should be combined with psychotherapy. I agree, but only if Pagoclone is shown to have some efficacy.

What I am most interested in is the placebo effect over the long-term. It is levelling off to zero. That would be good news for the reliability of such trials. If not, does placebo really reduces our stuttering long-term or is it the design and act of measuring that makes it look as if there is an improvement?

Plenty more news and a critical review coming on this blog!

Saturday, November 28, 2009

Psychotherapies

On Wednesday, Thursday, and Friday, Gilles and myself have reviewed and discussed psychotherapy for our upcoming book The Meme in Psychology. It was a mind-opening experience (a form of psychotherapy I guess :-) in the sense that I was able to see the wide range of psychotherapy approaches, and I am now able to see what has been done to me in the various stuttering therapy!

Clearly, psychotherapy is in a state of chaos, conceptual fuzziness and deprivation of a unifying framework (which we will of course provide in our book! ;-). Every psychotherapy seems to have created its own universe, seeing disorders through their lenses and treating accordingly. However, I have to revise my view that they kind of do the same thing. In fact, every psychotherapy is acting on a different dynamic of our complexity for change. Have you heard of the elephant and the blind people? Everyone describing the elephant in a completely different way: long tube, big trunk, bushy snake, massive surface. Each psychotherapy makes the elephant move in a different way: show him a mouse, shout a command, make a loud noise, pull his tail, and so on. I would also argue that not all psychotherapy are useful for all disorders.

And here comes the biggest danger. I grant psychoanalysis that some psychological issues are due to deferred childhood trauma and associated unconscious influences. However, the big question is to decide which one is. Of course, you can take all disordered behaviours and experiences and construct a theory based on some childhood and unconscious influences. However, that does not mean that it is the right causal theory! And that also explains the wild and idiotic psychoanalytic interpretation of stuttering being some kind of repressed needs and so on. Some guy gets paid to explain everything psychoanalytically. Having said this, if as a person who stutter, you sit done and do psycho-analysis, I am sure you will develop as a person and you will understand yourself better. And you might be able to better cope with stuttering. The same is true for behavioural therapy which assumes that normal learning processes led to disordered behaviour or experiences. For example, the brain has learned to fear spiders, and so we need to use the same processes to unlearn the fear. A not-very-bright and badly-informed person can come up with the theory that stuttering is all learned, which is clearly not the fact. However, this does not mean that some secondary stuttering is not receptive to behavioural techniques. In fact desensitization, unlearning secondary symptoms, and more do work for a committed hard-working patient.

And here is the critical issue. There is a big big big difference between the theory underlying a psychotherapy and the associated treatment techniques. As I said several times before, a technique might help but the theory used might be wrong or incomplete. So I would say that all psychotherapies can help for some people in some situations, and even if it is just for personal development. Of course, some will help more and more on the speech fluency side because they are closer to the causes of stuttering. However, don't talk to me about them giving a good theory of why people stutter in the first place. They don't. The practioners mostly create a theory based on their approach's focus on humans.

Winning poem

Here is the winner of the poem contest with a very intellectual twist:

Tiger, Tiger, so good with a putter
is it true you used to stutter

And the second winner is:

Stutter with love!
Pause comfortably!
then Move on with elan!

Wednesday, November 25, 2009

Disco Fever


Here is my performance at the District Toastmaster Conference. That's for the European title. The conference was held at a posh hotel just off the infamous Reeperbahn red-light district in Hamburg.


And here is the division contest, the level below, speech where I won.

Monday, November 23, 2009

Back from Hamburg


I am back from Hamburg from the District Conference of Toastmasters held in a chic hotel just off the most notorious streets in Europe, the Davidstrasse, the Herbertstrasse, and Reeperbahn. I did not make it into the Top 3, but my speech went well. Speaking in front of 200 people, it was a good feeling. I was not scared at all; I am starting to suspect some pathology on my part! Exhibitionism? Narcissism? Mania? Actually I enjoyed my speech and had the audience with lots of laughter. The ending was a bit messed up, as my second last line got such a response that the contest chair thought my speech was finished and came up to the podium! So my last line was a bit of a anti-climax. Many including myself had me in the Top3. Everyone agreed that two speeches were a bit better: one had the best content, and the other was perfect in delivery. I was just behind. But, I guess the ending issue got me... The judges are a bit picky on technicalities. In any case, it was an excellent experience to make it to the final stage and compete for the European Speaker. I was not far away and definitely I now know that I can speak and capture an audience of 200 people. There are video recordings. So I might post them, and face the verdict.

Thursday, November 19, 2009

Vote for your favourite poem!

What is your favourite poem? Vote here ----->
An eager thought left unspoken
Of a blank mind waiting for it to be spoken.

Dreaded light vowels
following the letter l
straight into the wall.

Stutter with love!
Pause comfortably!
then Move on with elan!

we listen, think, pause and stutter
we all have voices that matter

Winner Winner, Chicken Dinner
Winner Winner, I st st st stammer

Tiger, Tiger, so good with a putter
is it true you used to stutter

Wit masquerades as a fool,
After he opens his mouth.

Monday, November 16, 2009

Poem Contest


Give me your 2-liner poem about stuttering. Surely, yours cannot be worse than mine:
 An eager thought left unspoken
Of a blank mind waiting for it to be spoken.

Friday, November 13, 2009

Low birth weight doubles to triples the risk of stuttering!!


Per Alm and myself had some brain storming on this ground breaking large scale epidemiological article shedding important information on the underlying causes of stuttering:

Matern Child Health J. 2009 Nov 10.
Birth Weight and Health and Developmental Outcomes in US Children, 1997-2005.

Boulet SL, Schieve LA, Boyle CA.

National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, 1600 Clifton Road, MS-D02, Atlanta, GA, 30333, USA, sboulet@cdc.gov.

The primary goal of this study was to assess the association between the full birth weight distribution and prevalence of specific developmental disabilities and related measures of health and special education services utilization in US children. Using data from the 1997-2005 National Health Interview Survey (NHIS) Sample Child Core, we identified 87,578 children 3-17 years of age with parent-reported information on birth weight. We estimated the prevalences of DDs (attention-deficit/hyperactivity disorder [ADHD], autism, cerebral palsy, hearing impairment, learning disability without mental retardation, mental retardation, seizures, stuttering/stammering, and other developmental delay) and several indicators of health services utilization within a range of birth weight categories. We calculated odds ratios adjusted for demographic factors (AOR). We observed trends of decreasing disability/indicator prevalence with increasing birth weight up to a plateau. Although associations were strongest for very low birth weight, children with "normal" birth weights of 2,500-2,999 g were more likely than those with birth weights of 3,500-3,999 g to have mental retardation (AOR 1.9 [95% CI: 1.4-2.6]), cerebral palsy (AOR 2.4 [95% CI: 1.5-3.8]), learning disability without mental retardation (AOR 1.2 [95% CI: 1.1-1.4]), ADHD (AOR 1.2 [95% CI: 1.1-1.3]), and other developmental delay (AOR 1.3 [95% CI: 1.1-1.5]) and to receive special education services (AOR 1.3 [95% CI: 1.2-1.5]). While much research has focused on the health and developmental outcomes of low and very low birth weight children, these findings suggest that additional study of a continuous range of birth weights may be warranted.

Here are the conclusions of our debate. The statistical power of the study is very high due to the 88'000 children, and clearly correlates stuttering to birth weight. There is now clear empirical evidence that children in the lowest ranges of birth weight are twice to three times more likely to develop stuttering as compared to their normal-weight counterparts. Low birth weight is related to premature birth but also to various pregnancy problems. There can be a gene effect, but often it is environmental. (We are not completely sure about this split). It indicates abnormal neurobiological development of the brain and the body. Per will contact the authors to ask for a correlation matrix between the disorders, i.e. do some disorders occur at the same time. Per has written an article on a possible ADHD and stuttering connection. And Jelena Tadic has also talked about stuttering co-occuring with other disorders. The large study should more or less settle this open issue. Which disorders coincide with stuttering above random coincidence?

To summarize, low birth weight doubles to triples the risk of developing stuttering and confirms the suspicious that "stuttering" can start at the very least in these cases (but very likely in nearly all cases) years before the actual onset of overt stuttering!

Constructive meeting

Here is an update of my "battle" for people who stutter in Luxembourg. On Wednesday, I met up with the director of the special school dedicated to speech and language impairments, and one of his senior therapists, a special school teacher with a PhD in psychology. We had a constructive discussion after clarification of a few issues like the bad article, no clarification to the article, and more. We talked about causes and treatment of stuttering. To my "horror" and surprise, they are doing Lidcombe with the kids in Luxembourg. It seems to be everywhere nowadays. ;-) Then they asked me about my opinion, and I said that I have no idea whether it will help or not. Like any therapy, it could well modulate the severity if done well by therapist and by parents, and well received by the child. But there is no evidence that it will get rid of stuttering completely or does a better job than other treatments. They asked me what I would recommend, and I said that I do not know and that there is no clear evidence, but that I would do the therapy with the best therapist. I also said that we now know that intervention at the very least does not harm kids. We also talked about the causes of stuttering and whether structural changes are a consequence or the effect of stuttering. We discussed a few measures to improve treatment offers in Luxembourg: updating information leaflets, workshop on early intervention treatments, and organising day workshop for kids (and parents) who stutter.

So in general, a very constructive meeting. Of course, as always, you should watch the actions and not the words. And in a few months will see whether there are some positive changes.

Tuesday, November 10, 2009

Words and gesture processed in same brain region.


Words and gestures are processed in the same brain region suggesting an evolutionary link between interpretation of body movements developing into understanding spoken language.
Your ability to make sense of Groucho's words and Harpo's pantomimes in an old Marx Brothers movie takes place in the same regions of your brain, says new research funded by the National Institute on Deafness and Other Communication Disorders (NIDCD), one of the National Institutes of Health.

Sunday, November 08, 2009

I won the Division Contest




I f*******g won the Toastmasters Division Contest!!!! I had a good day, and the audience laughed at all the jokes which was a bit shocking. My body language was very good. Take note: if your speech is not that stable, at least you need to have good body control and content! ;-) So all those disco nights and Karate katas had some use!

The Division Contest is organized twice a year and was the humorous speech contest. It chooses the best speaker of all Toastmaster clubs in France, Belgium, and Luxembourg. There were eight competitors, the first two from each Area Contest. And each area has between 3 and 6 clubs, I believe, which each organize a club contest. In two weeks time, I will compete in Hamburg in the District Contest against 9 other division winners for the best speaker of continental Europe (18 countries with 152 active clubs). Wish me fluency! ;-)

Friday, November 06, 2009

Fluke or side effect?


A reader sent me his report on taking Pagoclone and Zyprexa, and discusses his experiences. We need to be aware of and discuss the potential downside of active substances.
I am a 34 year old PWS that started stuttering at the age of 12.  Go figure..  I was on the phase 2 Pagaclone trial a few years back and never gained any noticeable improvement with my speech.   I tried Zyprexa Zydis about 8 months ago.  I started at a daily 5 mg dose and after 2 week started to feel tired and withdrawn.  My fluency and blocking is worse when I am tired and that is what I felt like all day.  My doctor increased my daily dose to 7.5 mg and then eventually to 10 mg.  I felt even more withdrawn and even lethargic.  I noticed that my left eye lid started to involuntary tremor.  This never happened before.  I eventually stopped taking Zyprexa Zydis after 4 months.  I felt a boost of energy and my fluency was much better.  My eye tremor did not go away though.  It's actually worse now then when I was on Zyprexa.  It is not always visible but I can feel it and it is extremely annoying.  It tends to get worse under stress and expands to my other eye at times.  I am currently seeing a neurologist for my options.  I just wanted to let any PWS interested in trying Zyprexa know.  This does not necessarily mean that it will happen to you.  Just stating the facts.
What is going on here? There are two possible explanations. First, the tremor could be the result of taking Zyprexa, maybe a rare side effect. Or, second, he would have developed the eye tremor irrespectively of having taken Zyprexa. Maybe the tremor started due to another reasons: stress related? neurological issues? I thought about this, and it is impossible to give a definite statement, but only a statistical one.

There is a correlation between Zyprexa and eye tremors: Z related to ET. Everytime you have a correlation, there are four possible causes of this correlation: (A&B random, A causes B, B causes A, C causes A&B)

1) Z related to ET randomly. So by chance both happened around the same time. To confirm this random fluke, one needs to look at 100s of people and ask: Do the Zyprexa subjects have more eye tremors or not? If not, it is a random correlation.

2) Z causes ET. The compound Z causes ET presumably by modulating or modifying the neurology. This can be confirmed in random control trials if the Zyprexa group has eye tremors more often.

3) ET causes Z. I suspect that the eye tremor cannot cause the patient to take Zyprexa!! Rejected.

4) X causes ET and Z. A mysterious unknown force causes the patient to take Zyprexa AND have eye tremors. Here is a wild theory. The patient experiences the placebo effect while on Zyprexa and that also causes eye tremor in some. I am pretty sure that is not the case, but just to illustrate my point. Rejected.

So if you have eye tremor and assuming it is a proven side effect (which I do not think it is), do you know for sure it is due to Zyprexa? NO! It might STILL be a random fluke, a coincidence, or you are part of those who have this type of side effect. The only way to know with some certainty is to stop taking Zyprexa and see what is happening.

The world is complicated, isn't it? :-)

Thursday, November 05, 2009

The faces of stuttering



Stuttering occurs in all countries, even in Mauritius! (Thanks to Jim Caroopen for the picture.)

Your own truth might be wrong

I often hear people telling me that they stutter because X or Y. If I do not agree, they reply: How do you dare! How can you know myself better than I know myself. I know my own truth. It is a logical fallacy. It is clear that I cannot deny someone's experiences as a person who stutter: how he felt, what people told him, when he stutters more or less, and so on. And, I will never be able to completely understand them all. However, an interpretation of these experiences weaved into a theory on why they stutter is a completely different story. They glue the pieces of experiences together, but so can anyone else and they might come up with a different interpretation. We humans are easily fooled. A smile can stick as a pleasant experience in one's mind as a sign of sympathy from the stranger, but your friend's interpretation is that of a smile of embarrassment that you are stuttering.

It is very important to separate experience from interpretation of experience. You are the owner of your experiences, but not of the interpretation of your experiences for you could be wrong.

Wednesday, November 04, 2009

Sudden stuttering.

I get a lot of emails, and every person is different. Here is one such email. What would you suggest to him?

Hi Tom,

I don’t know if you have time for this. But I just feel like writing. You are the first person I have been in contact with for my stuttering problem. I would really like to share my experience since this is my biggest problem recently.

I have never stuttered. I am European and I have been in USA for a year now. I never remember stuttering before. I didn’t even know what stuttering was.

In high school I do remember some situations for a couple of weeks or a month that I couldn’t say FOUR. “Number 4” in my own language begins with “K”. Although it bothered me for a while. It wasn’t a problem to be concerned about and I always had my ups and downs on some other words.

What happened was that I might go through years or more than 6 months without stuttering. Than I would stutter for a while and then it would stop again.

So I never considered stuttering as a problem. I just thought that it happened whenever I wasn’t in a good mood.

In general I wouldn’t consider my self a stutterer. Or maybe 5%. But here is where the problems began. I came here in USA and of course my native language is not English.

I didn’t have trouble for a while and I never thought I would up until my English got better. I mean when it got fluent. And a lot of Americans are surprised by my accent. I barely have an accent. A few people can notice it.

But for the past 6 months I have gone through the most difficult period of my life. I stutter really badly. And it wasn’t up until recently that I have started to make a research about it. I am not a stutterer at all comparing to what I have seen on YouTube. I might stutter 4 or 5 words a day. (I know its nothing). But still those moments kill me personally. And its such a bad feeling. Or some words that I know that I will stutter and always trying to avoid them.

Since you are more experienced I just bought (right now) 5-htp 100 mg pills. Do you think that might help? I don’t have time to go trough therapy and all that. The other thing that I know is that the therapist won’t consider me a stutterer at all.

Because I don’t stutter when I talk about stuttering. Or we might talk to each other for hours and I won’t stutter at all. My stutter is really rare. But I do have some bad days.

The worst situation is. I love Caramel Mocha. Once I went to starbucks and I stuttered when I said it. Now I cant order it anymore. I always stutter at K. (K- aramel) When a friend asks me while waiting on the line “what are you getting?” I just say it normally. But when I get in front of the counter. I cant say it and I order something else.

Should I take these pills? What dose do you recommend?

Tuesday, November 03, 2009

New results from Lu et al.

Yet again we have new brain imaging work from China. More news as soon as I have read the article.

Exp Neurol. 2009 Oct 28.

The Neural Substrates for Atypical Planning and Execution of Word Production in Stuttering.

State Key Laboratory of Cognitive Neuroscience and Learning, Beijing Normal University, Beijing 100875, China.
Using an fMRI-based classification approach and the structural equation modeling (SEM) method, this study examined the neural bases of atypical planning and execution processes involved in stuttering. 12 stuttering speakers and 12 controls were asked to name pictures under different conditions (single-syllable, multi-syllable, or repeated-syllable) in the scanner. The contrasts between conditions provided information about planning and execution processes. The classification analysis showed that, as compared to non-stuttering controls, stuttering speakers' atypical planning of speech was evident in their neural activities in the bilateral inferior frontal gyrus (IFG) and right putamen and their atypical execution of speech was evident in their activations in the right cerebellum and insula, left premotor area (PMA) and angular gyrus (AG). SEM results further revealed two parallel neural circuits-the basal ganglia-IFG/PMA circuit and the cerebellum-PMA circuit-that were involved in atypical planning and execution processes of stuttering, respectively. The AG appeared to be involved in the interface of atypical planning and execution in stuttering. These results are discussed in terms of their implications to the theories about stuttering and to clinical applications.
PMID: 19879262

Question parlamentaire

Here is Claude Meisch's parliamentary question: (in French, we are a strange country switching between Luxembourgish, German and French, and sometimes English!)
Monsieur le Président,
J’ai l’honneur de vous informer que, conformément à l’article 80 de notre Règlement interne, je souhaite poser la question parlementaire suivante à Madame la Ministre de l’Education nationale et de la Formation professionnelle ainsi qu’à Monsieur le Ministre de la Santé et de la Sécurité sociale:
« 1% de la population mondiale bégaierait, selon les estimations, soit environ 60 millions de personnes, dont environ 5.000 au Luxembourg en plus, 5% des jeunes enfants, quelque 300 enfants par an, traversent une période de bégaiement. La journée mondiale du bégaiement (22 octobre) est l'occasion d'une prise de conscience par les non bégayants des difficultés qu'entraine cette infirmité.

Même si les spécialistes n'ont pas encore déterminé, de façon certaine, les causes de ce trouble du langage, il est possible de le contrôler ou de le guérir par des traitements orthophoniques et psychologiques.

Partant, je souhaiterais poser les questions suivantes à Madame la Ministre de l’Education nationale et de la Formation professionnelle ainsi qu’à Monsieur le Ministre de la Santé et de la Sécurité sociale:
Combien d’enfants et d’adultes sont connus être concernés par cette infirmité au Luxembourg?
A qui incombe la responsabilité pour leur traitement (enfants et adultes)? Quelle est la formation des responsables pour leur traitement

Combien d’adultes suivent un traitement à l’étranger? Ce traitement est-il remboursé par la Caisse Nationale de Santé?

Selon mes informations, la nomenclature permettrait uniquement aux logopèdes de traiter les adultes atteints de l’infirmité du bégaiement? Vu le nombre assez restreint de personnes concernées, une spécialisation des logopèdes devient quasiment impossible. Ne serait-il, dans le but d’un meilleur traitement du bégaiement, pas opportun de permettre une spécialisation aux logopèdes? »

Croyez, je vous prie, Monsieur le Président, à l’assurance de ma très haute considération.

Monday, November 02, 2009

Parliamentary Question on Stuttering


I managed to get Claude Meisch to ask a parliamentary question on the state and treatment of stuttering in Luxembourg. His request should carry considerable political weight, because he is not only a member of parliament, but also the Leader of the Opposition in Luxembourg at the youngish age of 38. For our US friends, he would be the Luxembourg version of John Boehmer/John McCain, pardon I mean Rush Limbaugh. For our English friends, David Cameron. Many thanks to him!

His question is addressed to the The Minister of Health and the Minister of Education, which typically reply in an official letter and in parliament, and at least should address some of the questions addressed in the parliamentary questions. The questions asked were rather polite, and do not touch the more sensitive issue on how it is possible that our national experts are quoted in an article making blatantly false statements on the causes of stuttering that the press release has neatly taken apart. Nevertheless expect both ministries to ask some rather existential questions internally: What is stuttering? Who is responsible? What do we actually do? Is this connected to the press release? Who is this Tom Weidig? Have you read his blog? How many are in treatment? How many have been in treatment? And so on. And the answer is that no-one has seriously thought about stuttering and I am not even sure they can dig out good long-term treatment data. I hope that they are coming up with some real answers or constructive proposals and not just some alibi answers.

The only thing I am not too excited about is that Claude Meisch choose to stick to the diplomatic "causes of stuttering are uncertain" and the brow-rising "can be controlled or cured with speech therapy and psychological intervention" lines. Too much room to wiggle out for our trauma-causes-stuttering and kids-imitate fetishists escaping the significant evidence for a neurobiological basis and for therapists to claim cures. In any case, it is progress.

Became second in Area Contest


I became second out of six club winners in the National Area Toastmasters contest in the category Humorous Speech, and so I am allowed to compete in the Division meeting Mid November with the winners from France, the Netherlands, and Belgium.

Here is my speech: (Please note that TUG stands for The Ugliest Girl in the Discotheque.)
The hunter hunts the prey
But sometimes the prey starts hunting the hunter!

Fellow Toastmasters, Welcomed Guests, That's exactly what happened to me!

I am stuttering and I was at an intensive three week stuttering therapy to work on my speech.
One night, we went to the local discotheque
We were dancing....
And my therapist comes over:
Tom Why don't you practise controlling your stuttering in a demanding speaking situation?
Try to chat up a few girls!
Look Tom, remember what you did in therapy.
It is all about hierarchies. Try the least demanding situation first.
Ok. Ok. Ok. But what is the least demanding speaking situation when chatting up girls.
And then I got it: TUG! I need to start with TUG.
I know I know you don't like this.
But consider my situation:
I could not possibly chat up the most beautiful girl in the discotheque.
Why? Because every single men stutters when talking to her: H---helllo. C--an I buy you a drink
Do you want me to keep on stuttering?
I need to do this for therapeutic reasons. I hate to do it, but I have to do it!
It's like in animal movies. You know at the end:
In the process of making this movie no animal has been harmed!
TUG doesn't know that she is TUG.
No! Only I know about it, and possibly all my friends. But that's it!
And FINALLY, she should be happy to talk me.
After all, I am NOT the ugliest guy in the discotheque!
I am tall, handsome, and charming...
First I am locating TUG.
MMm... mmmm.. mmm..
I cant do this. I do not want to offend someone.
Ok. You. I know you are a man... a very strong man.
But can you play TUG? OK. Thanks!
So I am scanning my environment! And then I found her.
TUG! It was her.
But how should I approach her?
Chat-up lines are extremely funny -- for men. Not for women.
I am just going to be natural.. Just be yourself Tom.
And I am the nicest guy in the discotheque!
Hi, I am Tom. How are you?
But how should approach her?
I am going to dance to her slowly
So I am dancing and getting closer.
So I move to her and say: Hi, I am Tom. How are you?
And she says: MISERABLE. NAFF OFF. And storms off!
--- walking back and down ----
Just imagine:
Not even... I repeat... Not even TUG wants to talk to me!!
A complete disaster, my friends were laughing.
So I was trying to hunt the weakest prey: TUG.
But at the end of the night. I was been hunted.
And I swear to god, I never tried to chat up any more girls!!!

Sunday, November 01, 2009

Mauritius, Fluency Island


The Stuttering Brain is read world wide. I recently got an email from the Mauritius self-help group. They asked me to post a link to their magazine Fluency Island celebrating four years of self-help with lots of articles. Isn't it nice to know that where ever we travel we are at home sharing a similar experience in different cultures. Do you think she is a member of the self-help group? Or maybe she is a speech and language therapist? ;-)

Saturday, October 31, 2009

Mastering stuttering should master their thinking first.

Let us run through the introduction of Mastering Stuttering to see where they go wrong.
How is it that you can speak fluently in some contexts and not speak fluently in other contexts? That most People Who Stutter (PWS) can speak fluently in certain contexts indicates that they have two primary speaking strategies that they have learned: 1) They can speak fluently which means they know how to talk. 2) Given the right circumstances, they also have a speaking strategy for blocking.
What determines whether or not the PWS speaks freely and fluently or whether they block? We believe that it is the meaning that the PWS gives to the context of where they are speaking. If the context is non-threatening to them, the strategy for speaking freely and fluently will be activated and they will speak fluently. On-the-other-hand, if the context is threatening to the person, then the blocking strategy will be activated and the person will start blocking.
Certainly these factors are influencing how we speak but they do not determine our stuttering behaviours.
The cause: There could be several causes for blocking including genetic predispositions and/or developmental problems. However, our concern is not primarily about the first cause of blocking.

Friday, October 30, 2009

Cool graph



It is sooo true. If you have not enough information, the confusion is great. But if you have too much information, the confusion is as great. That's the challenge we face to communicate stuttering to everyone, but also to describe it to therapists. We cannot start talking about the details of genes or different fiber tracts within the brain.

Thursday, October 29, 2009

Why support me?

It is important for us who stutter to have an independent voice in the debate on stuttering research, treatment, and politics. Someone who dares to speak out. And someone who knows what he talks about.

Here is what I do for us
  • I am speaking out my mind or that of stutterers, scientists or therapists who do not dare to speak out for various reasons. I am often their voice.
  • I am trying to change the nature of the debate. We need less obsession to a feel-good consensus but more constructive and productive debate to question held beliefs and move forward.
  • I very often get emails from people or parents who stutter. They are asking for help and advice, or just want someone to talk to. I am often the first person they ever dare sharing their experiences. I always reply to them with advice.
  • I am critically reviewing scientific research to a high professional standard. I have a wide range of relevant scientific expertise in areas of statistics, research design, neuroscience, and the ability to quickly get the essentials. I attended world-leading university like Imperial College London or Trinity College, University of Cambridge, and I keep in touch with my old university friends and colleagues. I am also in contact with many university professors in neuroscience.
  • I debate different treatment approaches without having the bias of being the provider of a specific treatment. I am independent and show you the alternatives: the benefits and costs of a treatment.
  • I keep an eye on our organizations that should help us, and highlight issues or weaknesses when important.
  • I have excellent contacts in the stuttering community, and many are supporting my work. Some secretly! ;-) So I know what is going on before others do.
  • I function as an information gateway between many involved parties, because I am independent and not a rival to a researcher or therapist. So they are more likely to share information with me.
Blogging is my hobby, but very time consuming with no expenses covered. I often go to conferences and have to pay for my transport and accommodation.If you like what I do, I would welcome a donation. Money donated to my blog is money donated to improve the life of people who stutter! And it is a recognition for the work that I am doing. T----tthank you! ;-)

Why do kids starts stuttering?



Over the last days, I was faced with explaining how children start stuttering.

Here is what I would say. First, children start stuttering because the brain regions involved in speech are not working together well, which leads to delays in speech initiation, which is modulated by stress, neurotransmitter levels, general well-being and which may lead to learned secondary behaviours. There are two different reasons why these regions are not working well together: either because some or all of the regions or connections are developing abnormally slow (possibly due to genes or environmental factors unrelated to stuttering in adults) OR there are fundamental structural issues with one or more regions or connections between (due to genes or/and neurological damage due to environmental events like virus infections, head trauma, birth issues). Unfortunately, both causes lead to very similar dysfunctions, namely delays in speech initiation, and though it is currently not possible to distinguish between both and to predict which child will recover. Recovery is probably primarily due to an abnormally slow but eventual development

Wednesday, October 28, 2009

Radio interview and aftermath


A radio interview (here in Letzebuergesch after the news flash!) with me will appear on the morning news tomorrow on National radio with an audience of more than 150'000 people. I hope this interview will further raise awareness of stuttering, and dispel a few myths on stuttering. As explained here and here, a Tageblatt article based on interviews with our "national experts" accompanying my "non-expert" interview was catastrophically misinformed. Stuttering has its main cause in the psyche, stuttering can be imitated by kids, and so on. I had to react even though I avoid at all costs to be dragged into Luxembourg life and issues!! ;-) Unfortunately both key people were not man enough to ask for and make a clarification publicly. So I worked full-time for two days to get a press release by international experts and associations, and sent it to all press media and SLTs.

Myths, Beliefs and Straight Talk


Check out this great text on myths on stuttering compiled by Peter Reitzes and Greg Snyder. I hope they don't mind to see their work on my blog!
Myths, Beliefs and Straight Talk
I will outgrow my stuttering.
Many teenagers and adults who stutter hope or believe that they will stop stuttering one day. Many deny that stuttering can be a problem or may even deny that their stuttering exists at all. Others may want stuttering to go away so much that they simply begin believing that it just might. For example, a 9th grade person who stutters was asked how he was going to manage his stuttering in college. The young man replied, “I won’t stutter in college.” This belief may be due to a couple of reasons, such as denial or hope.

Unfortunately, most people who recover from stuttering do so in early childhood. For example, most people start stuttering between 2-4 years of age, so if stuttering is going to go away by itself, it usually does so by 7 or 8 years of age. If you continue stuttering into your teenage years, you will most likely continue to stutter throughout adulthood. The good news is that there are many options and choices in managing stuttering productively. However, continuing to avoid dealing with stuttering due to denial or a hope or belief that it might simply “go away” tends to make our problems worse, not better.

Tuesday, October 27, 2009

IT skills of some SLTs and in self-help


Over the last hours, I am witnessing the extraordinary IT skills and understanding of some SLTs and some in self-help. I received an empty email with cc asr-speakeasy@... , and now I have tens of emails of SLTs asking to be removed from a mailing list that does not really exist except as the list of emails of someone.

The address is very likely an open relay, which means that it is a mailing list that is accessible to those who sent an email to the email address of the mailing list and this email is distributed to the members of the mailing list.

So someone by accident sent his or her mailing list as cc and now everyone replies and thereby sending it to everyone else. And everyone else thinking "I am on a mailing list" but they are not really.

My advise: IGNORE AND DO NOT REPLY.

I wonder how can they properly digest all the complicated statistics of outcome studies and scientific research if they do not even realize what is going on here?

And to all those who have received the email and did not reply. Congratulations! You have passed the test, and have potential!

[The email address has now been cancelled.]

Monday, October 26, 2009

Half a second to speech

A friend sent me this interesting article on speech:
The study found that it takes about half a second to transform something we think into something we say. And three very different kinds of processing needed for speech are all happening in a small part of the brain called Broca's area, which lies beneath the left temple.
I will talk about more this in future posts.

More gossip on Pagoclone trial

Here is more gossip on the Pagoclone trials: (Thanks to Holger.)
"I`m going in the open label phase in december, I also will keep you updated, but just to let you know, there are people that have gotten great results from what I was told. I have noticed zero for speech enhancement and side effects, there is a big chance I am on the placebo, I will know in december when they give me the real meds."

stutteringforum.com 21.10.2009

"Hi everybody, I have been involved in the clinical trail on Pacoclone for more that 6 months. Right now, I am on the last batch of the double-blinded phase. The first three batches of the pills which I took, had little or no effect on my speech. However, this last batch really have a positive effect on my speech. It seems like a miracle."

stutteringforum.com 21.10.2009

Saturday, October 24, 2009

Press release published - Response by Jean-Marc Hild.

The press release has been published in the Luxembourg daily as a response to the factually incorrect statements on stuttering. That's very good news as this will set the record straight on the causes of stuttering and on treatment, and requires a clarification from Hermes and Hild.

I received a very constructive and genuine email from Jean-Marc Hild, Head of the Service Audiophonologique. He basically agreed with what I said in my interview and he also distanced himself from the article and the statements attributed to Georges Hermes on the causes of stuttering. He clearly said that he himself believes that stuttering has a physiological underlying cause. The press release has criticized the statement attributed to him that "using touching the knee or snip the fingers" should be part of the therapy. He explained that he feels treated unfairly because this statement has been taken out of context, as he explained and listed several treatment approaches to the journalist and only mentioned "using touching the knee or snip the fingers" as a useful tool (I do not share this view but it is debatable.) but not the essential part of the treatment which requires looking at the whole person.  The journalist only kept the knee and fingers. As you can imagine, he said that he learned the lesson of never giving a quick interview without checking the written article beforehand! His email and story sounds genuine. He also offered me to visit the institute, and said that he would be very interested in me collaborating with the institute to benefit from my expertise.

I have offered him to make his email public so that his side of the story can be heard.

Thursday, October 22, 2009

PRESS RELEASE

This press release went out to all the Luxembourg media outlets, parent associations, and a few ministries to set the record straight on causes and treatment of stuttering after the misinformed interview of Hild and Hermes. It took me nearly two days to get everyone on board and to have a common press release text. Big thanks to Prof Ratner (for feedback and encouragement), the British Stammering Association (especially to Norbert Lieckfeldt for encouragement, the first draft and feedback), Prof Neuman, Prof Euler, the German Stuttering Association (Beate Schwittay), the Swedish Association (Anita Blom), and last but not least ELSA (Edwin Farr).


PRESS RELEASE (original version) October 22nd, 2009

Response by international stuttering associations and world-leading university professors to statements made on the causes and treatment of stuttering attributed to Georges Hermes, Director of the Centre de Logopédie, and Jean Marc Hild, the Head of the Service Audiophonologique in Luxembourg.

Today is International Stuttering Awareness Day. Like most communication disabilities, stuttering is generally not well understood by the general public, and there are many myths and prejudices. 
We are surprised to read, in the Luxembourg Tageblatt on October 21st, reports of the views of the Director of the Centre de Logopédie, Georges Hermes, and the Head of the Service Audiophonologique, Jean Marc Hild, on the causes of stuttering, and what treatments are available. We feel compelled to reply, because these views, if reported correctly, are rather eccentric, and at odds with research findings of the last decade and more.

Tageblatt interview in English

I am still amazed at the power of blogging. A reader, Ora, was willing to translate my interview into English:

Conversation with the researcher and “Stuttering Expert” Dr. Tom Weidig in the Context of World Stuttering Day

Fanta Instead of Cola and Emails Instead of Telephone
By Luc Laboulle
From Luxembourg Tageblatt – Wednesday, 21 October 2009.
(Translated by Ora McCreary)

Wednesday, October 21, 2009

The unbelievable state of knowledge on stuttering in my home country



Today my interview with the Tageblatt, the Luxembourg daily, got published. They kindly allowed me to link to the pdf file: Tom's Tageblatt interview (in German). What a wonderful opportunity to inform everyone about stuttering and share our experiences and dispel a few myths about stuttering. Or so I thought! :-( And then the newspaper had the glorious (but very understandable) idea to ask the "experts" at the National Center for Speech and Language Therapy, the Centre de Logopédie. And here are the results of their interview: Interview of Hild and Hermes. Here is an English translation.

I am not questioning their motivation and I am sure they want the best for the patients. However. According to Georges Hermes, Director (!) of the Center, on the causes of stuttering: (unless he has been misquoted) (translation from German)
The causes of stuttering are diverse but nearly always to be found in the psyche of the person who stutters.

There are three causes: Stuttering as an expression of traumatic experiences or negative experiences over a long period are the most common cause for stuttering.

The learned stuttering, where kids imitate stutterers and cannot get out of this cycle anymore.

Stuttering due to developmental issues of speech and language found mostly in children of kindergarten age.
I cannot believe that the director of the national center seems to have out-dated ideas on stuttering. Unless he was misquoted. Where is the scientific evidence? Even wikipedia knows better!

Here is what the US National Association writes:

Free audio book for stuttering kids!



Check out the free audio book of Stuttering Stan Takes a Stand. He is teased and bullied about his stuttering, Stanley the squirrel refuses to let on that his feelings are being hurt, until one day he learns an important lesson from a new friend.

In the name of us all, thanks a lot for the efforts you are in!!! Written by Artie Knapp. Illustrations by Barbara Leonard Gibson. Read by Alessandro Cima.

Just a little note: maybe this could have read by a stutterer, too! Alessandro is a bit too fluent for me. ;-)

Tuesday, October 20, 2009

Interview with Tageblatt


I had an interview with the Luxembourg daily Tageblatt on stuttering and my blogging activities. A Tageblatt journalist, who attended the same winter camp for teenagers 20 years (!) ago, contacted me, because he is reading my blog sporadically. He wants to do a story for the World Stuttering Day! Great. I had already two interviews in Luxembourg newspapers: one on science, and one on my book on venture capital funds. And a radio interview on stuttering. There is nothing really happening in stuttering in Luxembourg. We have a stuttering association, but it's defunct right now. And I do not really have the time and energy to resurrect it.

A bit of cultural education. The Luxembourg newspapers are mainly in German, but there are also French and Luxembourgish articles. Lately we also have pure French newspapers which are mostly for the French speaking commuters. It is a bit of mess, really. It often depends on the journalist's preference to a language as to which language is used. But radio and TV is mainly in Luxembourgish. Though there is an English Ara city radio and a Portuguese Radio Latina. What's interesting about Luxembourg is that we strictly speaking do not really have press freedom. The biggest newspaper Luxemburger Wort is owned by the Catholic Chuch, the Tageblatt by the Trade Union, the Journal by the Liberal Democrats! But unlike in the US, the newspapers in Luxembourg are relatively neutral in their reporting and ideological fights between them is infinitesimally smaller than compared to the US: see Fox News vs liberal media. Everyone, newspaper and parties, are more or less on the same line and only differ in nuances: it's called the Luxembourg consensus. I used to be a part-time science journalist for the Luxemburger Wort, and wrote a few articles on black holes and the laws of nature.

Won humorous speech club contest!



Yesterday evening, I won the humorous speech contest of my Toastmasters Club! Five of 40 members participated in the contest. The humorous speech contest is the most difficult one psychologically speaking, because what if nobody laughs! :-) You need to be a hardened speaker! On Saturday I will compete in the Luxembourg area contest against 5 other participants (two each from the three clubs). Toastmasters is really a great and safe place to practise public speaking. I can only recommend it to everyone! It's the second time I participated and the second time that I won. Last time I went until Paris.

Again, my success shows that fluent speech is just one part of communication. Public Speaking is more. It's about writing a good speech that flows well, body language, stage presence, vocal variety, engaging your audience, pausing, humour and meaning. Some cynics might say that I only win, because I stutter. They have pity. Sure, I probably get a few extra points for my courage, but I am immediately loosing them again because of dysfluent speech.

A common fallacy trap

Time and time again, I see the following fallacy. Someone comes up with a theory of stuttering that fits their experience, and then they automatically believe that their interpretation of facts or theory must be right. Of course, that is fallacious. Why? Because there might be alternative theories that also fits all facts. So which theories is the correct one?

Here is an example. My 95-year old great aunt keeps on telling me that someone stole something from her, and I ask why. She says: Well I had placed my money here and now it is not there anymore. Therefore someone must have stolen the money, and she claims it is her neighbour. Her theory is completely logical, consistent, and fits all the facts. Indeed maybe her neighbour sneaked in to steal, after all the money is not there anymore, he could have jumped over the fence, and he is over-friendly offering her help! Very suspicious. The trouble is of course that there is an alternative theory, namely that at her advanced age of 95 she just simply put the money somewhere else and forgot about it! I told her clearly that while I completely accept her experiences are factual i.e. that she had money, that she cant find it anymore, that the neighbour is overfriendly, I do not share her interpretation of the facts and believe that it is more likely that she forgot about it. She agreed with me. And when I asked her whether she knew some old friend who forgot stuff. She agreed again with me. And then she says: But unfortunately it is not true in my case! ;-)

And the same is true for some theories on stuttering...

Monday, October 19, 2009

Stutter Talk on Ethics of Blogging


Have you listened to other people's conversation and it's about you they are talking! It happens to me once, at Indiana University in Bloomington, and they talked about me being anti-social: they complained that I was always in my room studying! What a sad life he has. And this one guy says: Dude, Tom stutters. I just don't understand why he cannot speak fluently! I just do it automatically! And this other guy says: Yeah, and A played chess with him and thought that he was drunk! At this point, I stopped listening for mental health reasons! ;-)

And now they are talking about me again but publicly! Check you Stutter Talk's post on the Ethics of Blogging. I am getting a velvet-gloves-iron-hits on some of my posts, namely The Crackpot Award of Sally Reed and The Resignation of ISA chairman Benny. A few civil comments:

Friday, October 16, 2009

A Pagoclone trial participant reports

I got an email from a participant of the Pagoclone trial. He is one of 300 that participated, and he suspects that he was in the treatment group and saw benefits at the higher dose. He started in April and is now moving to the open label phase, which means that the double blind is finished (as I suggested) and everyone gets Pagoclone openly to see the long-term impact. For long-term impact, you could argue that nobody cares about placebo or not: what works works - no matter how it works.

Here is his report:
I wanted to give you an update as to my experience with the pagoclone study. I've been on it since around April or so. At least I suspect that I have been on pagoclone for at least part of this time. I was initially given a dosage of two pills twice a day, which lasted for the first month and then went down to a dose of one pill twice a day. I do believe that I experienced a modest improvement in my fluency, somewhere around maybe 40% better fluency, and then after the dosage change I experienced a pretty dramatic drop in fluency to almost pre-study levels. At my last visit, three weeks ago, I was informed that I am transitioning from phase 1, double blind study, to phase 2, open label study, and should find myself on the placebo during this 8 week period to accurately transfer to the open label phase. When this occurred, whether real or as a result of being informed by the Dr. that I would be on the placebo, my stuttering increased dramatically and am now definitely at pre-study disfluency levels or worse.
So to sum up, I do believe that I have been on the medication for at least part of the study. I do believe that when I was taking the higher dose my fluency was MUCH better. I do believe that the lower doses and the placebo have had a dramatic effect on my speech to pre-study levels or worse.

Since April I have experienced zero side effects. No headaches, weight gain, sleeplessness, nothing. Of course, I don't have a clue as to what my blood work shows but am sure if there was a problem, then the clinic would have most likely informed me.
Overall, I have been happy with the results from the first part of the study and would definitely purchase this medication at the higher dosage level. At the lower level, if the price was cheap enough I would purchase the medication but it would have to be cheap as the rewards were minimal.

I hope this gives you some idea as to how the medication is working for at least one person.