Thursday, December 27, 2012

Frank's gene mutation

Gene Mutations Gene Mutation : Base pair Insertions or Deletions, Causes, Mutation Disorders
Frank was so kind to write up his experience of having been diagnosed with a gene mutation that correlates to stuttering. I am not exactly sure whether it is the 3-gene system that everyone talks about. What is also interesting is that people with Ashkenzi ("Central/Eastern European") Jewish ancestry seems to be more likely to have this gene mutation. It is very likely that as genetic subtypes seems to exist, they are more prevalent in some ethnic groups.

Frank reports...
I became involved in the study via my participation in the NSA convention that took place in New Jersey (where I live) in 2008. I attended Dr. Drayna's workshop on the genetics of stuttering and during the course of the workshop he asked participants in the workshop who stutter and have family members who stutter to donate a blood sample for inclusion in his study. My father stutters so I volunteered to provide the blood sample. 
Several months later he called me to say that I had the genetic mutation they where studying; that this genetic mutation on chromosome 12 was related to the rare genetic disease of mucolipidosis. He said there was some indication of stuttering in some patients with mucolipidosis. He invited me to come to the NIH in Bethesda, Md. for several days for a complete study of my physical and sensory systems to determine if I had any other physiological changes associated with this disease.I was very interested in this study, after doing a little research about this disease on the web, as some forms of it are more common in members of the Ashkenazi Jewish community of which I am a member. 
I spent three days at NIH. Dr. Drayna mentioned that I had a double copy of the mutation but didn't get the disease as I lack a likely "starter gene" required to get the full blown disease. I received a complete physical while at NIH; they seemed to be especially interested in the skeletal system and took numerous x-rays. I recall receiving EKG and EEG testing and very likely other tests I don't recall. I should mention the staff was very pleasant and accommodating and both my wife and I stayed at the Safra Lodge at NIH that was very pleasant. 
At the conclusion of my stay at NIH I was I was told they didn't find physical abnormalities other than some spinal arthritis common in people my age (I'm 62); they also didn't correlation with severity of stuttering and the presence of this mutation. They were kind enough also to send a copy of the study results as they appeared in the New England Journal of Medicine in 2010
This study has had a significant effect on my attitude toward my own stuttering as I now believe my stuttering has a strong genetic component and I'm much more accepting of my disfluencies. 

Sunday, December 16, 2012

Navigate through my 1000 posts using dynamic views

Blogger has introduced a new way to visually represent blog posts, which allows the reader to easily skim through all posts. This eliminates the big downside to blogging: the disappearance of old posts. Unfortunately, many good features about the old template are lost so I decided not to switch. But they found a compromise until a further upgrade to the new template. You can directly link to this new template called Dynamic Views and run a dual blog site. That's what I do: see the link below the blog title! An added bonus is that I now restrict the recent posts to be displayed to ten, which makes the blog load four times faster!

Enjoy the huge archive! I was amazed at how much I wrote... a valuable resource that is now accessible to the wider stuttering community. I might not be right each time, but surely the reader gets an idea into his mind to wrestle with!

I can even group them according to topics, but for that I need to give all my 1000 posts topic labels... any volunteer to help me out here? ;-)

Genetics Update or Why our community is at least 14'000 years old

Yes, even the Flint Stones might have had to listen to stutterers...

Check out StutterTalk's Peter's as-always excellent interview with Denis Drayna on the "latest Drayna wants to tell us about genetics as of December 2012". Some exciting news: biochemical experiments show that the gene mutation reduces activity of an enzyme by half, the earliest known mutation happened 14'000 years ago, roughly 10% are of the 3-gene subtype, and many more gene signals found.

All-in-all, congratulations to Dennis Drayna's team for their hard and constructive scientific work.

Here are the key nuggets of knowledge and insight that I picked up and commented:

1) They studied the effect of the mutation of the 3 genes of the identified cycle and they see a reduction of the activity of the corresponding enzymes ( a form of protein that accelerates chemical reactions to help the body to produce the stuff it needs to live) by 50%. This fits neatly to a reduced (but not zero) capacity of the brain to function normally in speech. Think of my motorway analogy: we have 2 lanes instead of 4.

2) As we know, more than one gene mutation in the three-gene cycle causes a severe disorder, but only one mutation correlates to stuttering. They also did the biochemical experiment for 2 or 3 mutated genes out of 3, and got a dramatic reduction of 90 respectively 100% of enzyme activity. This neatly explains why 2 and 3 mutation lead to a severe disorder and a single one does not as the body is just about able to handle it biologically.

Wednesday, November 07, 2012

Nan's excellent article on What Is Stuttering

Check out Nan's excellent article on What Is Stuttering.

I agree with everything she says on the science side. I mostly agree with what she says about treatment. Except, I would also have mentioned self-help groups and  the importance of effectively dealing with having a handicap, which does not need to involve searching for fluency. She does mention Lidcombe, but only for its ability to move kids who stutter earlier into recovery. That is probably true, but I still do not rule adaptation or measurement effects completely out. And she could have mentioned that other alternatives are no worse.

All-in-all, it shows that she is a regular reader of TheStuteringBrain for many years! ;-)

Tuesday, November 06, 2012

May Conference at Hotel Croatia

Check out the website of the upcoming May conference in Cavtat at Hotel Croatia: see here.

All the speakers are relatively well-known and some of the most dynamic researchers in the field. I just find it a bit strange that Katrin Neumann talks about the state of genetics, and not about brain imaging, because she is not a geneticist or worked in the area. And as always I am concerned when experienced therapists think they can do proper outcome research. Please share your experience with us not your faulty scientific expertise.

Friday, October 26, 2012

Screening test for stuttering?

The BBC has an article entitled Screening test for stuttering 'closer': see here.

Here some important quotes:
The Wellcome Trust team says a specific speech test accurately predicts whose stutter will persist into their teens. The researchers, based at University College London, used a test developed in the US called SSI-3 (stuttering severity instrument). They found that the SSI-3 test was a reliable indicator of who would still have a stutter and who would recover - while other indicators such as family history, which have been used, were less so.
I am not sure exactly what the hype is about, but it seems to be saying that the more severe you stutter as a child the less likely you recover? That sounds to me obviously true on average. That's also the factor I found in my outcome study that correlates with positive outcome: the less you stutter before treatment, the more likely you are fluent afterwards! I have to read the paper, but I am skeptical.

The most interesting comment is that "researchers also found so-called "whole word repetition" was not a reliable indicator of persistent stutter". I vaguely remember that being a prediction by the EXPLAN theory pushed by Pete Howell. But I could be wrong.

I am also not impressed by Mr Lieckfeldt's BBC comment:

 "At five, there is still a window of opportunity to help those with a stammer."

 And afterwards, no opportunity to help those with a stammer? ;-)

"If we intervene early enough, there is a really high success rate of normal, fluent speaking, whereas for six- to eight-year-olds, the recovery rate drops like a stone."

OBVIOUSLY, due to the natural recovery rate! Those that would recover, recovered already!

Monday, October 15, 2012

Delayed Auditory Feedback wins Nobel Price!

This year's Ig Nobel Price winners:

ACOUSTICS PRIZE: Kazutaka Kurihara and Koji Tsukada [JAPAN] for creating the SpeechJammer — a machine that disrupts a person's speech, by making them hear their own spoken words at a very slight delay.

REFERENCE: "SpeechJammer: A System Utilizing Artificial Speech Disturbance with Delayed Auditory Feedback", Kazutaka Kurihara, Koji Tsukada, February 28, 2012.

Their "discovery" is that you can use DAF to stop people from speaking. When people hear their own voices with a slight delay, they stop speaking. One proposed application is a portable speech jamming gun, for use in places like libraries, as a quiet way to stop people from speaking, since loud interruptions are more disruptive than the speech itself.

I glanced through the paper, and it does refer to DAF for stuttering:

DAF has a close relationship with stuttering. DAF leads physically unimpaired people to stutter i.e., speech jamming. On the other hand, it is known that DAF can improve stuttering [1], and medical DAF devices are available [6]. We utilized DAF to develop a device that can jam remote physically unimpaired people's speech whether they want it or not. This device possesses one characteristic that is different from the usual medical DAF device; namely, the microphone and speaker are located distant from the target. [Thanks to Ora for his contribution]

Tuesday, October 09, 2012

How much do stutterers know about stuttering?

I have been stalking the ISAD conference again on Lidcombe as someone asked why Lidcombe is successful without asking first whether it is.

But let me inject some encouraging comments. I really liked to two posts.

From Jon Reilly:
Hello, I'm currently a graduate student at Kean University conducting a thesis regarding "education on stuttering." I was curious if you could recommend any studies that tested the knowledge of PWS on basic facts about stuttering. I researched and found John Van Borsel, but he presented surveys to the general public. I'm looking for PWS. Thank you in advance for any assistance you can offer.

I have never heard anyone do this research, and I really like the topic. Obviously, knowing about stuttering as a person who stutters is important. I was thinking for a while to suggest that a stuttering therapy should have a test for pws about stuttering. And only if you pass the test, can you enter the therapy. I would really be interested in seeing how much they actually know about stuttering. But then I also would like to see the same study done on generalist SLTs! ;-)

From Lynne Shields on common factors for lasting change:
Hello Reuben, There are quite a few factors that contribute to successful management of stuttering for adults. A few that I have seen as important among the people I've worked with are: 1) being ready for change (as opposed to just wanting change to happen), 2) having fairly specific goals (as opposed to wanting the stuttering to go away), 3) developing tolerance of stuttering, allowing them to experiment with their speech, 4) readiness to manage negative feelings and attitudes about their stuttering, if appropriate, and 5) the willingness to experiment, facilitating problem solving and independent management of their stuttering. There are certainly others, and I am sure others will share their viewpoints, as well. Best regards, Lynne

Sunday, September 30, 2012

Molly rocks!

Molly shows great courage and determination to speak out. She definitely has taken the right decision, and she will feel more and more liberated from stuttering. She might still keep on stuttering but not be a slave of her stuttering.

How do all those who keep the obvious a secret feel about those public outings?

International Stuttering Awareness Day

Check out the on-line conference for the International Stuttering Awareness Day starting tomorrow! An interesting mix of articles from people who stutter sharing their experiences, therapists talking about treatments, and researchers sharing their research and theories. The good thing is that you the reader can leave questions for the author, that cannot really be ignored and a no-answer is obvious to all! And it's a great retro experience of what the web used to feel like 10 years ago... ;-)

The worse thing about the conference are all those (female) students who start their questions with "Thank you very much for the efforts you have put into your article. I am really fascinated by the topics XYZ...." If  we are lucky, they actually ask a real question after those few sentences! So here is my advice: Just ask your damn question, no-one is interested in whether you find something fascinated, don't think about the consequences of your questions, don't be blinded by authority, and make up your own mind!

P.S. I have hacked the website in 10 seconds and you can already access the conference here. ;-)

Monday, September 17, 2012

Stuttering: Inspiring Stories and Professional Wisdom

Check out Peter Reitzes' book which collects stories and wisdom from people who stutter and professionals. I asked him to send me a summary of what his book is about. Attentive readers will note the ambitious "Publication No. 1." on the title page. I didn't have time to read through the book, but it seems to be cast in the mindset of its editor: providing others the opportunity to talking about their experiences and throwing out ideas while avoiding more definite scientific or generalizing statements that I could take apart! ;-)

 Here is the summary:
The book is titled Stuttering: Inspiring Stories and Professional Wisdom.  
It contains 25 chapters written by people who stutter, leading professionals and the spouse of a person who stutters. All chapters were donated to StutterTalk to help raise money for the free podcast. The book is available in paperback at Amazon for $12.99 and as an ebook and download at Kindle, iTunes and Smashwords for $5.99. Barnes & Noble online will carry the book within a few weeks. I

Monday, September 03, 2012

In Berlin

I will be in Berlin from Wednesday to Saturday with Jelena, and have to attend a business meeting, too. So if someone is from Berlin, let me know and you can join us for drinks or dinner! I am already in contact with Blanka, who had the first (and only) German-speaking blog on stuttering: Stottern usw. I am actually very much surprised that no-one else has a German-speaking blog...

Monday, August 20, 2012

Web-based Cognitive-Behavioural Treatment: an innovative approach

I am not any more on the mailing list of that gold-standard Australia stuttering group except for threatening letters from lawyers. But I have my agents everywhere. So thank you, Agent I!

Here is an initiative that is probably reasonable: a web-based Cognitive-Behavioural Treatment. The idea is that a lot of the suffering and handicap comes not from stuttering but from our psychosocial adaptation to stuttering. CBT is a well-known psychotherapy approach that helps patients to achieve a better psychosocial adaptation by changing unhelpful thoughts or reducing conditioned fears, for example.

You can register from anywhere in the world. So might be an interesting experience with little downside and probably little relapse.

Reading about how they analyse their outcome and then sell it is probably not, but that is my problem not yours! ;-)

Here is their invitation.

Paul's stuttering course

I highly recommend to you Paul Brocklehurst's course: see link here. In a sense it's a revolutionary approach, because he does not focus on treatment, but he only wants to inform people who stutter about their condition. I strongly believe that you can only manage your stuttering well by looking at yourself from a different perspective where you understand where stuttering comes from, what it did to you, how it affects you, and what treatments people have tried.

What I like about it is that no pressure for more fluency is applied. You are not expected to be more fluent, but you just go there to learn more and ask as many questions as you want. Impossible to feel like a loser afterwards as there is no relapse of understanding and knowledge!

And as Paul says, this will prepare you well for a real treatment.Well done, Paul!

Here is a quick summary of what he intends to do:
These classes are designed to provide people who stammer with a clear and detailed insight into their condition, including what factors influence its severity and what practical steps they can take to better control and manage it. The course will be interactive, with plenty of opportunity for questions and answers and to try things out. It will provide an ideal foundation for individuals wishing to enrol on one of the intensive therapy courses. Each meeting is divided into two halves. In the first half we give a presentation, introducing the topic to be discussed. Then, after a short coffee break, the second half will be practical and interactive, giving participants an opportunity to share their experiences and to contribute to the class.

Wednesday, August 08, 2012

Fill in student's questionnaire

Please help a "poor" student, Beth Harris from De Montfort University at Leicester (England), to collect data for her thesis work. Your participation won't change the way we look at stuttering, but will provide her with good data to learn how to do statistical analysis in the real world.

Go to this link.

Sunday, August 05, 2012

A blog on taking meds for stuttering

A PhD student, M.,  has created a new blog:
I've created a blog where I will post information on the experiences people have with various medications they're trying for stuttering. This way we can get as many people as possible to post their experiences so that we have a nice little anecdotal data source for stutterers interested in meds. 
It is a good initiative, but based on experience I know that quite a few have written to me about their successes but then when I re-contacted them months later, they stopped taking them! In fact, I do not know a single person that contacted me that still takes them! NO-ONE!

He wants to stay anonymous. So here is my message to him:

Of course, I will do that. But if you ask me to remove your name from this post, then I think that psychotherapy (and self-help group) might actually be a better choice of treatment for you. You are running away from your handicap. All that effort spent on hiding and taking pills with uncertain outcome...

Thursday, July 19, 2012

BREAKING NEWS: Lidcombe no better than Demands & Capacities

Last week, the International Fluency Association's conference was held in Tours, France. Check out the IFA 2012 website: here. I as many others boycotted, voluntarily or due to a lack of money, the conference organised by Elsevier, the publishing company that has the academic community against themselves for over-charging. Even the local organisers have expressed their concern to me.

Anyway, I have breaking news for you. As you might remember, I have been and am a strong critic of what I see as sloppy outcome trials done by the Lidcombe consortium testing their own therapy approach, and force-feeding that approach to the therapy community as the gold standard.

In previous posts, I talked about an interesting trial with far better methodology (especially on sample size and observation period.) They decided to split the kids into two groups: one doing Lidcombe, and the other group doing Demand & Capacity. The published pilot study of 30 kids showed no difference between the two approaches. After much difficulties (including some unacceptable actions by some people), they managed to get a full long-term 18 month trial started with at least 120 kids, much more than the Lidcombe studies ever did but with zero public exposure, except on this blog.

At her IFA talk last week, Marie-Christen Franken said that their preliminary analyses show no difference between treatment when they compare pre with 18 months follow-up randomisation in percentage of stuttered syllables. They found an effect of time and of severity. Final results are not expected for a few months, as the PhD student is on maternity leave...

Anyway, to conclude, the combined evidence (from the pilot study and the preliminary results) point to the fact that both approaches show no difference in outcome. The message to all therapists in the world  should be crystal clear: don't believe what the Lidcombe people preached that they are the gold standard and no other approach should be not used as not tested. Other approaches are not worse. This fits well to evidence from psychotherapy showing that no method is better (except for a few special cases) and what counts is the PATIENT-CLIENT RELATIONSHIP.

But if no-one is better, maybe nothing is ultimately effective. The trial cannot answer absolute outcome as they did not have a control group.

Sunday, June 10, 2012

Tim Poe: Not stutterer but mental issues??

And the story continues... He is apologizing for his lies, but insists that he did not lie. Does he have a mental disorder making it difficult for him to distinguish between reality and lies? Or is he just putting on a show?? He didn't seem to stutter in the interview either.

Friday, June 08, 2012

Does Tim Poe fake his stutter?

EVERYONE is asking the question..

Tim Poe has told lies about his life as a soldier, and provided a fake picture. He never got the Purple Medal for war injuries. But he seems to have been involved with the Army in some respects. No doubt the full story will emerge very soon.

So let's study his stuttering. As I wrote, I have never heard of a similar story, i.e. a non-stroke brain injury with such clear symptoms and no other apparent deficits at first sight. However, as his injury story is wrong, this fits with my observation that this case would have been unique. But he could have gotten an injury from somewhere else, too.

The real question to me is a) whether he stutters or not, and b) did he exaggerate his stuttering. I have to say that at first sight he sounds rather authentic. He stutters at the right places. However, as I replayed his speech over and over again, I noticed that his non-stuttered speech is very very smooth and controlled. And his stuttering is rather short and does not propagate into tensed non-stuttered speech. So he does not seem to feel a lot of emotional stress during the stuttered syllables. But he did have secondary symptoms during the stuttered syllables. So I am wondering about whether a middle-of-the-road theory is possible. He is a stutterer, knows how it feels to stutters, but has exaggerated his stuttering. Maybe he stuttered as a child. Or he is just a very good actor. Or he really did stutter as severely, and just invented the rest of the story to feel better about himself. And by telling that lie in a small social circle, for example with his fiancée, he might have had to keep it up as he entered the contest and then it just got bigger.

I have no idea. Except that he can sing. And his confident and calm singing must be the result of many many years of practise. His story that his therapist told him to sing in the shower and then he discovered his voice is not adding up, in my view.

And did he also learn to play the guitar while singing in the shower?? ;-)

But who cares... he is famous... and we are not!

P.S. I just listened to an interview with his fiancée. She sounds genuine, but just knows him from after the "injury". Either he had another brain injury and mixes up stuff. Or he completely made up the story...

Tuesday, June 05, 2012

Even neurogenic stutterers can sing

Check out the performance of this ex-soldier who got brain damaged. He stutters but he can sing like all people who started stuttering at a young age. I do not actually know of a similar case in the literature. And it shows that speaking and singing is not the same neurological pathway. Would be interesting to see his brain scans? I am convinced his damage is in one of the loci that Catherine Theys showed us at the Antwerp.

Friday, May 25, 2012

Treating stuttering with pharmaceuticals might harm you

A reader's comment on Holger's suicide:
I think it was the medicine that made him commit suicide not the stuttering itself. i really feel sad about him. I also used some medicines to cope with my stuttering. It really helps i was almost %100 fluent but it had serious side affects, i started to have memory loss, sexual disorder, i was always tired and sleeping too much so i quit, when i quit i get into depression and at some point i did not care if iam dead or not. before this drug i was always baffled when i heard someone committed suicide it seemed impossible for me to do it but after what i go through with the medicine i understood how those people feel. So if you ever think about taking drugs consider it twice. it really messes up your brain chemistry and i assure you that thats much worse than stuttering.

And another who tried it:
My conclusion is, right now, it's not the solution, but may have some positive effect on some people. My stuttering has been greatly improved by getting over the fear of it and accepting it. I believe you have written about this before, and perhaps part of why you joined toastmasters and participated in other activities. When I took the job that I have now, I knew that I would be faced with speaking often and in front of large groups. I had a lot of fear about that. However, now...the fear does not have as much sting as it used to have. 

The European Fluency Specialization

For speech and language therapists who want to specialize in stuttering:

CALL FOR APPLICATIONS COURSE 2012-2013 (download here) 
The ECSF consortium would like to announce that the registration for the 2012-2013 course cycle is open. The ‘ECSF’ is a one-year program, providing both the knowledge and the clinical skills, to assist speech-language therapists in becoming European Fluency Specialists. The program is a well-designed combination of lectures, clinical practice and home assignments. If you are already working as an SLT, this specialization course is compatible with your current workload. Lectures are provided during two intensive weeks, scheduled during the academic year. These modules are combined with follow up sessions in the home country of the participant. The local sessions take place outside the intensive weeks. Preparatory reading and home assignments form an integral part of the course. The specialized clinical training, under supervision of a fluency specialist, can begin after the first intensive week.

Monday, May 14, 2012

Visual Outing...

An interview with me appeared in the biggest weekly t'Revue: here in German language.

A bit of a visual outing as I allowed them to publish pictures while I am stuttering. Pictures that will be seen by ten thousand people. And the pictures were filling the upper half of two pages! A bit like a Playboy spread! ;-)

Thursday, April 26, 2012

Holger Stenzel is dead

I received the sad news that Holger Stenzel is dead. He was well-known in Germany and with international experts for his keen interest in stuttering medication and his self-reports on using medication. Holger was also a great source for my blog, and constantly kept me informed on stuttering medication.  Check out these few posts where I talked about Holger.

He once came to visit me in Luxembourg. I was certainly impressed by his level of understanding on the functioning of neurotransmitters in the brain. His day job was as an independent electrician. He tried a few medication and wrote about his experiences, but none was ultimately very effective. He had high hopes for Pagoclone. Too high hopes, which ultimately left him deeply disappointed and probably without a fall-back option, I think. Which should also be a lesson for those that create those high hopes...

I am really sad to see him gone. Especially, as his sudden death was of course not an accident, but his own decision. Which makes me wonder whether stuttering played a crucial role or not. We will never know.

Holger, Vielen Dank für Deine Arbeit und Deine Unterstützung. Durch Dich war ich und alle meine Leser immer gut informiert! Wir werden Dich nicht vergessen und an besseren Therapien und Verständnis des Stotterns arbeiten: Medikament oder nicht!

Sunday, April 15, 2012

Stuttering-language connection?

I have always questioned the connection between language and stuttering. Clearly, adults who stutter do not seem to show any language deficits. I have not observed a deficit in myself, nor in others. Studies showing a connection therefore must suffer from statistical error (correlation by chance), sample error (clinicians only see the extreme cases, i.e. children suffering from multiple deficits), and measurement errors (language ability measured wrongly), if I am right.

Here is an article by Nippold from the University of Oregon questioning the connection.


This article explains why it is reasonable to question the view that stuttering and language ability in children are linked, the so-called "stuttering-language connection."


Studies that focused on syntactic, morphologic, and lexical development in children who stutter (CWS) are examined for evidence to support the following claims: 1) that CWS, as a

Monday, March 26, 2012

Presentations are now on-line

The presentations from the Antwerp conference are on-line: here.

You can also find my workshop: here.

And the title, abstract and summary:
3. Title:
From genes to social context: Understanding and treating stuttering in a biopsychosocial framework

4. Abstract:
Genetic, neurobiological, behavioural, cognitive, and social factors contribute towards the dysfunction and handicap experienced by people who stutter, and are also key to an improvement of the condition. In an upcoming book, we propose an overarching

Wednesday, March 21, 2012

Meet up with TSB readers in Zuerich.

Yesterday, I met up with Lukas and other people in Zurich who stutter. They invited me for dinner. Thanks! We had a lot of discussions on stuttering, on my upcoming book, on disadvantages of covert and overt stuttering, and on finance.

I will soon put up a picture of three of us... unfortunately the others had already left.

Saturday, March 10, 2012

Joseph Agius: Using humour

Joseph Agius does what I want therapists to do, namely to talk about aspects of therapy. He chooses the topic of humour. His talk is quite funny. For example, he asked therapists whether they use humour in therapy (result: 95), and he asked patients (result: 20% use humour)

He then switched to gelotophobia, the fear of being laughed at, and how pws differ to fluent speakers. They only seem to be relevant to situations where stuttering is relevant.

He went too fast through the slides, so I cannot catch up, but he mostly shows how humour is affecting stuttering/psychosocial functioning and therapy. Some techniques are shifting perspective, exaggerating, word plays, and self deprecation.

Emergent topics, Neurogenic stuttering: Theys find that neurogenic stuttering is due to lessions across a network

She focuses on patients with neurogenic stuttering after strokes.

Many case studies are known.

She talked about prevalance, functioning, MRI scans, and aim to find the lession locations

She had N=37, 17 neurogenic stutterers and 20 controls.

9 areas of the left hemisphere showed differences between control strokes: all important for speech production. She suggest that the location lessions are part of a network that disintegrate and leads to stuttering.

Due to limited coverage, other area might not appear in this study. But her results are consistent with most current understanding of the neurobiological basis.

Interesting avenue, but i am not sure whether you can 100% relate to developmental stuttering. I asked whether there are differences in people who stutter since childhood and those due to a stroke. She said that some patients especially with Parkinson behave differently, but many are similar to "normal" stutterers.

After the talk, I had the opportunity to have an in-depth discussion on her research. An interesting aspect is that most patients are HAPPY to stutter as it is a sign that they improve because the stroke led to a temporal inability to speak.

Emergent topics, Vanhoutte: no results yet

She talked about speech motor, research done with her supervisor van Borsel.

She talks about preparatory loop and executive loop, and that timing is not right.

She studied temporal aspects of speech perception and production using EEG. They did silent reading of action words to get a clean experimental signal. These action words trigger a response in relevant motor/sensory regions, and that's how she can study motor perception...

She did not present any results... so it's a bit of a no talk... :-(

Emergent topics, Emotional reactivity & regulation: Ntourour finds difference

Katerina Ntourou talks about a similar topic than Haley. She wants to study emotional reactivity and regulation.

She tortured kids for science. She showed them toys, asked for the favourite one, and locked it away in a box! And she then gave them 10 keys to open the box, and they ALL didn't work!!! How did she pass through the ethics committee? :-)

Anyway, she then studied differences between fluent and non-fluent group. She found differences, but she went too fast at the end. I was a bit surprised that she said she found differences between the two groups look similar. I couldn't fully absorb it because it was all too fast..... :-(

I am somewhat concerned about the experimental set-up to measure emotional reactivity and regulation. It does not seem to be a very well controlled variable nor is the environment. As a past child who stuttered, I most likely suffered from social anxiety, and hated having to communicate with new people. Had I been tested in such a situation, the social anxiety would have made me more aroused quickly.So I am not sure about what exactly is measured. But as I said, it went too quickly, I would need to see it in detail.

Emerging topics from Antwerp, Autonomic arousal: Arnold finds nothing.

Hayley Arnold showed us research she conducted with MacPherson on the autonomic arousal in pws as compared to fluent subjects. We know that autonomic arousal may negatively impact speech motor control. So maybe pws have a higher arousal and so this might increase stuttering or might prevent them from recovering.

She did not find any significant differences between children who stutter and those who don't for different tasks elicitating autonomic arousal. Also, arousal seems to start BEFORE stuttering events. I don't find this surprising at all. Kids are getting anxious because they have to speak and then this makes their stuttering worse...

So CONGRATULATIONS for the courage of presenting NULL results! Signs of great science! Watch out those who always find something... :-)

Blogging from Antwerp

I am sitting in the lobby of Lessius College right now. Let me blog up the conference day of yesterday.

The conference started rather abruptly with Ludo Max's first slide showing us a typical box-arrow diagram of a brain function model: the standard model for motor control. Some people were probably a bit shelled shocked. In the past I spent some time understanding the different parts of the model, and I understood then after 20-30 minutes. But in the lecture, I didn't have enough time to regain complete understanding. But Ludo's strategy is pretty straight-forward. Test the different arrows of the model. And that's what he has done. Over the last years, he has rigorously tested the different parts of the system in people who stutter. I took part in one of them when I visited lab in Connecticut a few years ago. He explained the different experiments quite nicely. And he kept returning to the theme that pws learn slowly but they eventually get it. I liked his talk. But I am still not sure exactly what the results are telling us. Maybe the slow learning is a symptom for an on average inferior processing capacity in certain brain regions, but I am not sure slower learning caused stuttering to manifest itself. I asked about subtypes, and he agreed that this is an issue but it is not clear how to resolve this currently, on which I agree. He made an analogy with Eskimos' having tens of words for snow to discuss more subtle aspects of snow. But here, our great scientist is the victim of an urban myth: they don't! :-)

Marilyn Langevin's talk was a good example of what is wrong with clinician-turned-researcher research. She is a good, and foremost confident, speaker, and probably also a good therapist. But the informational content of her speech was low. She presented an outcome study of low standards and many potential flaws. I don't have time to list all the flaws, but here are a few: (a) low sample size, (b) highly biased overt measurements, (c) great fluctuation in sample (one person was highly dysfluent in year 1 sample and fluent in year 2 sample, so the fluency in year 2 is a result of treatment?? right... ) (d) potential sample bias (many did not reply to questionnaire) (e) focus on counting stuttering syllables. I challenged her on this, and she said that we should be happy with this due to the lack of funding and difficulty of getting data. Well, I never understand this pseudo-argument. Surely you cannot justify lowering standards, right? Either you can ensure good standards, or YOU JUST DON'T DO IT. I am especially sensitive to this area as I analysed the outcome data of a fluency shaping therapy with 300 or so patients: that is 300 not 10-15. And everything else was done more rigorously, and still I don't even fully trust these results. Unfortunately, this outcome got little exposure, and I am not even sure where Prof Euler published it. He did present it at an Oxford Dysfluency Conference.

The worst of it all was that she repeated words like "as a scientist", "the p-value", and "in science". Let me be clear, she is not a real scientist for me. She should have talked for 60 minutes about WHAT SHE DOES IN THERAPY, and not how badly she does research because a lack of funding and mishandling of statistics and set-up. I want to know about her experience as therapist.... drop "science" and focus on what you are good at!

Norbert Lieckfeldt spoke about clients' expectation of therapy. I was unable to attend, as I was preparing my own speech/workshop in the afternoon. He kept on saying after the speech that pws and parents want foremost better social functioning rather than fluency. He also supported this by some research from a communication research project. But I pointed out to him that in many other communication disorders parents KNOW that their kids' dysfunction is permanent and that's why they focus on better psychosocial adaptation. But in stuttering, parents and pws experience great fluctuations in fluency, and that's why their goal is also based on more fluency. Only later when many attempts of permanently more fluency failed do they switch to improving psychosocial adaptation.

Then we had the poster sessions. Unfortunately, I was busy with my talk.

The afternoon session was for young researchers. That was also one of the criticisms I gave for the last conference. I am happy they follow this path. All three speeches presented interesting topics. I am not going to discuss them here...

Then I had to go to my workshop. I had about 20 people in the audience. That's probably a good number because my room was on the third floor, and the others on the ground floor, first floor, and second floor. So I had to fight with gravity. I was not very happy with my delivery. I had too much to say in one hour, and left many concepts under-explained. I had two good questions at the end. I was happy they got my idea, namely to unify all frameworks into a single one. A Dutch researcher mentioned a similar model than mine, but when we talked afterwards, we realized that it was quite different.

After the day, I went to have drinks with Jelena, Paul, Max, and others who I am not sure want to be publicly associated to me! ;-) With one of them, I discussed the standards of research in the field. And we discussed the leaking of emails regarding the quality of PhDs from Australia. We also discussed my blogging style, and ways of changing it were gently suggested. ;-)

Then, two of them left for the official dinner for the conference VIPs. As Kurt Eggers noted this morning to the whole auditence: "I hope you all enjoyed yourself yesterday evening. We did, too!"

In the evening,

Friday, March 02, 2012

Battle of conferences?

Check out this new conference in Rome: website. I am not very impressed by the scientific committee and some of the key speakers. Looks like the Italian have gotten some funding and choose to invite the wrong people! ;-) We now have four conferences in the next four months. WOW. That never happened before. The one in Antwerp (I am attending), in Rome, in France, and in the US. I heard that this new conference is attracting some speakers that have cancelled for the other conferences. Are we starting to see a battle of the conferences? Might be a good thing..

Wednesday, February 29, 2012

German book on stuttering therapy

Einar recommded a book to me from his German therapists. So if you speak German, check it out: here. Please note that Einar still stutters, but seems to be a happy communicator. Actually, he sometimes talks far too much! ,-)

Monday, February 13, 2012

Clearer thinking within the Lidcombe community

Finally, reason seems to have come to the Lidcombe community in the words of Ann Packmann's article Why does the Lidcombe Program “work”? Mary Kingston, the editor of the newsletter Lidcombe News, quite neatly summarizes the Lidcombe community's mental bias by asking Ann to answer how Lidcombe works and not whether Lidcombe works. She does not even contemplate the thought that Lidcombe could not work!

Ann answers the how question with "I don't know" and the whether question is very much watered down to a level that I can more or less agree with. She says many things that  I have been preaching all those years...

It's time that the Lidcombe community tones down its claims, and listen to Ann's words. And maybe it's also time that Ann and Mark Onslow should switch posts. She should be professor and he senior research fellow. ;-)

Here are her words together with my comments. Take the time to read carefully!
.... It is a topic that has intrigued me for years, as I am sure it has most

Saturday, February 11, 2012

Final Program of 3rd European Symposium Fluency Disorders

3rd European Symposium Fluency Disorders

March 9 & 10 2012
Lessius University College Antwerp

The finalized program is available on the website.

Alcohol and stuttering

A readers asked me how drinking affects my stuttering. I had a very clear answer. I am a teetotal and I just don't know! ,-)

Generally two things happen. You can get more relaxed, you think much less about what other people think about you, and your motor control goes down. So I expect moderate drinking to ease stuttering, and severe drinking to let you loose motor control.

To be honest, I am not sure about research findings. People taking any drugs (psychoactive substances) report changes in fluency, but it seems to be different for different people.

So share your experience with us! Any drug is allowed! ;-)

Friday, February 03, 2012

Between acceptance and improvement

A friend posted on facebook: "if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid" I invented a reply: "if you let a fish be a fish, he will never become a lion!"

Both statements are relevant for stuttering. I receive many emails from readers asking for advice, and I am drawn between both statements.

People who stutter have clearly a neuroanatomical weakness in the brain that makes us stutter. Nature did not gave us the ability of effortless speaking. Yet, we want to climb that tree, and feel frustrated, inferior, unfairly treated, and angry. Why should we react in such a way when we are not at fault! We should not judge ourselves with those who have "normal" brains.

However, acceptance is very close to resignation, and might prevent you from achieving your potential. I very strongly believe that the majority of the negative psychosocial reaction to stuttering is due to our interpretation of life, and not due to the stuttered speech. Our abnormal brain region does make us fear, doesn't make us be embarrassed, and doesn't prevent us from speaking up. We learned that as children as a natural reaction. We must strive to be a lion even if it's unachievable. Only then can we improve.

So a clear advice is that you should work on reducing your psychosocial reaction and accept that you are a fish. I can clearly say that my handicap now at 38 is far less than at 18 even though I still stutter (and probably not less).

Thursday, February 02, 2012

TED Talk on Stuttering

TED is famous for interesting thought provoking speeches. Many side TEDs have developped over the years, for young talents and for regions for example. This TEDxNewy talk is on Lidcombe treatment by Sarita Koushik. I know her, because we meet at the Oxford Conference some years again, and were part of the happy party gang. She is a nice person, but I must say that she has unfortunately been indoctrinated by the Lidcombe way of doing research. Her talk is very much in-line with the highly doubtful statistical approach to evidence based practise. Her research involves finding the optimal treatment schedule, and very likely a fata morgana due to huge statistical fluctuations. You already need 100 kids to just test efficacy of treatment. So how do you compare between groups of different treatment length??? I am nearly convinced she is chasing a phantom...

And I am not sure I like her stuttering at the beginning, because she does not actually stutter. What is your opinion?

Wednesday, February 01, 2012

Mother blames herself for therapy failure

Here is another story of a mother where the Lidcombe magic did not work, and again she blames herself because the scientific outcome studies are so convincing.So it must be her fault:
I am a mother of a boy who just turned four and has been in Lidcombe for over a year.  We have barely missed an appointment in that time and I unless my son has been sick I have always implemented the home treatement.  We live in Australia and attend a private clinic in Sydney... I guess the family history is pretty strong. 

...  Am even a bit nervous writing to you and reading your site, as of course I want to believe my son will speak fluently forever aqnd never know he stuttered.  After another relapse, and my son still being in stage one of the programme after approximately 13 months of non stop weekly treatment I have started to wonder what is going on and if there is other treatment available.  Also

Wednesday, January 25, 2012

Is Elsevier suffocating yet another stuttering conference?

Earlybird* member of IFA €574.08
Earlybird* non-member €693.68
Earlybird* consumer* €418.60
Student** €358.80
Conference dinner €83.72

Have a look at the IFA Congress 2012 page, and see yet again what happens when the organisers are not doing the work themselves but outsource to Elsevier. Let me make a quick calculation: cheapest possible with early bird. The student fee is the cheapest with 360 € plus 80 € conference dinner. So 440 € plus 4 days accommodation (lets say cheapest 50€). So we are at 640 € plus travelling. Let's say from Britain: 150 €. So we end up with roughly 800 €. And that is the very cheapest! Which student can pay that, except if it comes from a research grant.

If you are a consumer (i.e. stutterer) or a therapist, you must pay at least 1000€. If you come from overseas, probably 1500 or more. That pretty much excludes all except the richest countries.

The key is that Elsevier is taking a profit and you have to pay VAT. And they would claim that they have to pay staff and website. But that is a semi-lie as their staff probably handle 10+ conferences each, and most admin is done by the website.

Monday, January 23, 2012

1.5 years to write four pages!

The luxembourgish audiophonological institute has finally managed to produce a leaflet for stuttering kids. It took them about 1.5 years for four pages, even though I have given them a corrected version of their old leaflet.
It's in German and French, and I have to say that at least I cannot disagree with what they wrote, only the infantile font they used. They used to write that stuttering can be due to psychological stress from their social environment but not anymore. Progress has arrived in Luxembourg. See here.

(Thanks to Lukas for telling me about stuff happening in my own country!)

Tuesday, January 17, 2012

Happy New Year!

I wish you all a Happy New Year. I know I have not been keeping up with my regular posts. The next months will be a bit stressful because I have to read 3000 pages for an exam (CFA Level 3) and I need to get my book published.

But I do have plenty of material for posts and try to make more time for the blog.You can find my prediction for 2012 on StutterTalk. As usual, I am not very happy with my StutterTalk performance. I keep on making grammatical mistakes, phrase my ideas in strange ways, or just have strange ideas. I am just not good at on the spot performance. I also see that at Toastmasters. I really need to work on that part more... The only type of short-term performance I am good at is making jokes on the spot. Or at least, I think I am. But trying to say something intelligent usually fails to be so...

Oh, and if you want to be a guest blogger, just email me!