Thursday, December 29, 2005

First evidence of brain anomalies in kids??

I am going to send a letter of complain to the editors of The Stuttering Foundation newsletter for being more up-to-date on PDS research than this blog!

The Winter edition has pretty interesting articles and reports on research I wasnt aware of! For example, Ehud Yairi reports on brain research with children:

Brain imaging studies of children should also enhance understanding of this issue. Our team members, Chang, Erickson, and Ambrose (2005) successfully obtained high resolution structural MRI data from stuttering and control children ages 8-13. Initial results indicate significant group differences in white and grey matter volume in brain areas involved in integrating sensory and motor aspects of speech. Testing younger children closer to onset should advance our knowledge.

Reference given: Chang, S., Erickson, K., & Ambrose, N. (2005). Regional white and grey matter volumetric growth differences in children with persistent versus recovered stuttering: An MRI (VBM) study. Presented at the annual meeting of the Society for Neuroscience, 2005, Washington, D.C. Program No. 565.5. 2005 Abstract Viewer/Itinerary Planner. Online

This research (if replicated) weakens the argument that structural anomalies in people with PDS is a consequence of PDS and not the cause. I guess due to the ages, from eight to thirteen, it is still possible that it is a consequence, but no-one can now claim "No wonder the brain is different after decades of stuttering"!

Sure, there will be some effect from stuttering even in younger kids, but I think it is mostly there from the start. Something in the developmental phase around 3 goes wrong. Another article comes to my mind (of which the editors of The Stuttering Foundation are surely not aware :-) from Japanese researchers, who found differences in processing in small children with disfluencies. I'll try to dig the article for you. I think he is called Mori.

Very interesting article

There is a very interesting article by Lisa Scott on a session "Genetic and neurological correlates of stuttering" at the last American Speech-Language-Hearing Association (ASHA) conference. All four of them have done good work, and let's hope they see the need and find ways for multi-disciplinary collaboration!

Here is the introduction:

In November, four of the leading scientists in stuttering presented their latest research at the American Speech-Language-Hearing Association convention in San Diego. Participating in a session entitled, “Genetic and Neurological Correlates of Stuttering,” were Drs. Dennis Drayna, NIDCD, Christine Weber-Fox, Purdue University, Ann Foundas, Tulane University, and Gerald Maguire, University of California-Irvine. In a session coordinated by Dr. Christy Ludlow, NIDCD, four presenters focused their discussions on state-of-the-art research in the understanding of genetic and neurological factors that contribute to stuttering. Three of the four researchers, Drs. Drayna, Weber-Fox, and Foundas, have previously contributed articles on their research to past issues of this newsletter.
You will find the full article: here.

Tuesday, December 27, 2005

Two types of factors for recovery

The factors increasing the chance of a positive therapy outcome are still largely unknown. The only sure factor is the severity of your stuttering. So if you are stuttering severely before therapy, you are more likely to keep on stuttering than someone who has stuttered mildly. So the bigger your problem with PDS, the more likely you are not becoming fluent after therapy. But that's it! No other factors are known. That is what I found looking at the KST data, and also what others seem to find.

I am still not sure what they are. But I conclude that the path to becoming a more fluent speaker, must be divided into two types of factors:

1. PDS-Specific factors: Severity of your stuttering. And then some guesses: How big is the physical anomaly? How strong are the secondary systems? Are you naturally a fast speaker? Is your PDS due to genetics or neurological incident in childhood?

2. Other factors: Some guesses are. Are you a bit obsessive and pedantic (when it comes to applying your techniques)? Are you often emotionally suffering (from PDS and have a strong motivation to change)? Have you undergone a life-changing experience like a car accident (that seriously affected you and you decided to work your stuttering?) Can you control your impulses well? A change in some neurotransmitter cycle? Are you in the right life situation (to foccus on therapy)?

Friday, December 23, 2005

New twist to stuttering genes

I have decided to spend a bit more time to read up on genetics during the Xmas and New Year period, and write a popular-scientific article about the genetics of stuttering. I have been encouraged in my endeavors by the Pennsylvania court decision that it is still OK to talk about and teach evolution without reference to intelligent design. :-)

Most research on genetics and stuttering has revolved around twin studies or looking for genes or combinations in samples like families where most members stutter: see a previous post. This new article on stuttering and genetics puts a new spin on the issue and in the right direction. A gene alone is not enough, it seems. You need the right combination of genes, or the right conditions for the gene to have important effects: read about the Epistasis effect. The researchers suggest that maternal age at birth might be such a epistatic factor.

Maternal age at the birth of the first child as an epistatic factor in polygenic disorders.

The identification of the genes for complex, polygenic disorders has proven difficult. This is due to the small effect size of each gene and genetic heterogeneity. An additional important factor could be the presence of unidentified epistatic factors. In the broad definition of epistasis, the effect of one unit is not predictable unless the value of another unit is known and one of the units may not be a gene. We have previously identified maternal age as an epistatic factor for the effect of the LEP gene on the age of onset of menarche. We report here the effect of maternal age and the age of the mother at the birth of her first child (maternal age 1st) as epistatic factors for the interaction of the dopamine D1 gene (DRD1) with obsessive-compulsive behaviors and with stuttering. The epistatic effects of maternal age 1st were stronger than maternal age. This type of epistatic factor may be generalizable to many other gene-trait interactions.

The science journal Science has named new research on genetics of other brain disorders like dyslexia and Tourette syndrom as a 2005 Breakthrough topic. I will talk about this in my next post, and be desperately trying to make a connection PDS.

Tuesday, December 20, 2005

Arty French stuttering blog

If you speak French, you should have a look at this French stuttering blog: Parole de Bègue.

If you dont speak French, still have a look! The design is beautiful.... :-)

Pebbles under the tongue

Here is a "rival" blog on stuttering: Pebbles Under The Tongue. John MacIntyre describes his efforts to become (more) fluent with a fluency shaping therapy. Currently John is in the maintenance phase after the intensive therapy phase. Of course, this phase is critical, and often relapse happens. And a lot of patience, courage, honesty-to-yourself and stamina is needed to keep on course. Qualities I think John shows admirably in his last post:

Up until last week I had done my daily shaping every day. But last week I missed 2 days, and this week I missed Monday, Tuesday, and Wednesday. I wasn’t happy that I missed it, but life just kind of took over. By mid week I had totally lost my ability to use my targets, increasingly using my previous spontaneous fluency pattern.

But Wednesday evening, I was stuttering like a maniac picking up a prescription at the drug store…I was blocking badly. And as reminiscent of old times, the guy behind me, just had to see my face as I attempted to shield myself from the embarrassment! He started off behind me, but when I started to stutter, he came around my right side leaning over to watch me. When I turned my back on him, leaning left, he moved completely around to my left side. I turned away again, and he again moved to my right. At this point, I realized he was determined to watch, so I stopped trying to get away from him and let him watch me make a fool out of myself!

Guess what … I came home and did my shaping! I did it yesterday and today. I don’t think I’ll miss it again for a while. ;-)

I don’t know what the heck that was, but before my therapy, I definitely would have stuttered and interpreted the hang up as some kind of rejection. Then I would have felt like crap for the rest of the day. At least now I know what ever the heck the problem was … it wasn’t my problem and I quickly moved on with my work.

In this post, he has made public his before and after video. The changes are amazing, and very similar to the ones I observed at the KST. There are also videos of myself at the KST. I'll see if I can get hold of them.

Here is John's talk given at Toastmasters.

Monday, December 19, 2005

Pagoclone results in Mid 2006

The results of the pagoclone study will be out Mid next year: "In July, the Company announced the initiation of a Phase II clinical trial with pagoclone, a product under development to treat stuttering. The Company is currently on track to have results from this trial by mid-year 2006."

My past posts on pagoclone are here, here, and here.

Monday, December 12, 2005

Off to Switzerland

Upps I posted this in my other blog.... :-)

I am off to Switzerland for a week, but might post if I have Internet access. I am going to meet up with someone from the Zurich self help group. He is regularly reading my blog, and I got to know him via email.

Strangely enough, when I try to speak German with a Swiss accent, I hardly stutter ... Maybe I (or we all) should consider moving to Switzerland as a good treatment approach... But then I am not quite sure why there are still Swiss people who stutter? :-)

Saturday, December 10, 2005

Picture of Tom

Some people commented that the blog is a bit boring... So I added my picture. If you cannot stand looking at me, please will you let me know and I take it off. Actually, maybe I get annoyed first about looking at my picture too often.. :-)

I plan to do a few more changes... If you have any suggestions, please let me know.

Biggest obstacles to better understanding

Here are Tom's Top obstacles to a better understanding of PDS.

Five removable obstacles:

1. missing paradigm to study brain disorders with many different interacting layers.
2. lack of rigorous scientific discussion in favour of a every-one-is-welcome and everyone's-thoughts-are-interesting-even-if-completely-wrong attitude.
3. no big money going into PDS research.
4. research field mostly populated by not-very-good or good-but-not-outstanding scientists, and by professors with money, power and good expertise but limited scientific insight. And outside researchers with insight have limited expertise in the complexity of PDS.
5. no good structure to do meta-analyis and unity all research.
6. researchers rarely replicate studies, but do different experiments.

Five obstacles you have to live with:

1. No-one dies from stuttering.
2. Brain is a complex system with many different interacting layers.
3. You can make little money from PDS.
4. Most people are victim to logical fallacies.
5. PDS is more like a high crime rate in a city than a broken down computer.

Friday, December 09, 2005

Nothing ado about hearing?

In a previous post, I described this article.

My view is very much in line with what Peter wrote: here. Actually, I am wondering who Peter is? :-) I googled "Peter stuttering". And I find a Prof Peter Ramig and a Peter Louw. I would guess it is Peter Ramig, but I have never met him.

Some more comments:

1. Their review is not very good. As you do not have the actual paper, here is one quote "individuals with PDS have... a cortical disconnection between the frontal operculum and ventral premotor cortex [reference: Sommer et al.]". Several issues here: 1) they present it as a fact, even though they only quote one source Sommer et al. 2) Sommer et al. never said such thing 3) They found a lower coherence in a fiber tract. This is either an experimental artefact or a structural weakness. But not a disconnection as such, more like a noisy phone line or a 1-lane motorway. 4) There is no direct connection between frontal operculum and ventral premotor cortex. To summarise, such reviewing practise is really annoying and encourages myth propagation. (Thx for input by Per Alm)

2. They find correlations by looking at many different variables and not by looking at the variables a-priori considered interesting. Looking at too many variables, there is a considerable chance that one variable is correlated to stuttering (for example) by chance. They used self-rated dysfluency as measure of stuttering.

As Peter says, the different reaction to changed sounds could just be a natural learned behaviour to their stuttering. But even if this is the case, does this observation not tell us that therapy needs to consider hearing issues? Or is it irrelevant?

Thursday, December 08, 2005

Battle with German titan

I am currently having a discussion with Andreas Starke, the titan of German stuttering therapy on a German discussion forum.

If you speak German, have a look here.

Wednesday, December 07, 2005

4000 visitors!

According to my webcounter, 4000 visitors have sofar visited my blog since May. And I have 22 different visitors per day, which is pretty OK considering the speciality of the topic, and my many technical / scientifically oriented posts.

Visitors come from Europe (55%), America (37%), and the rest.

The most visitors are from the US (33%) and Germany (21%). The Luxembourg (14%) is probably mostly myself! :-) The UK representation is pretty poor, but this is actually just a reflection of how little PDS research is done or discussed in the UK. From my experience, by far the most activity and good discussions are going on in the US and in Germany. France is no-where, confirming everyone's suspicion that they still live in a world of their own. They were unlucky (as opposed to the US and UK) in that their language did not become the world language... :-)

There are daily fluctuations in the number of visitors. Typically there are around 30 visitors by working day, and 10 visitors on a weekend day, confirming my suspicious that most of you are abusing your company's Internet access for private matters! :-)

I also noticed that the hits go up the more I post. So this observation is a good incentive for me to post more.

Monday, December 05, 2005

Not much ado about hearing?

There is a discussion going on in the PDS literature on whether deficiencies or malfunctioning in the auditory cortex (responsible for hearing) causes or aggravates stuttering, or whether it hinders therapy. For example, auditory feedback frequency-shifted (FAF) or delayed (DAD) enhance fluency. And in brain imaging studies, the auditory cortex shows a different (lower) activation that for controls. And check out my last post, where I have described my difficulty to realise that my speech has been much more fluent after therapy most times.

These phenomena seem to point to a crucial role for the auditory cortex. But I dont really believe that hearing has much to do with the PDS. In my opinion, the FAF and DAF enhances fluency, because the brain switches to non-automatic speech due to input that sounds unfamiliar. Ingham and others have explained the brain imaging results for the auditory cortex using the concept of efference copy: see here. But, there is certainly truth in the fact that people with PDS often dont notice the progress they have made. I do not believe, that this is a defficiency of the auditory cortex, rather the consequence of a normal functioning. The stuttering is just left out after years of stuttering as a background noise. And the absence of no stuttering sound is just not registered.

I could be wrong and I am open to be converted. This new article out in Neurology Abnormal speech sound representation in persistent developmental stuttering does not really convert me but have a look at their abstract:

OBJECTIVES: To determine whether adults with persistent developmental stuttering (PDS) have auditory perceptual deficits. METHODS: The authors compared the mismatch negativity (MMN) event-related brain potential elicited to simple tone (frequency and duration) and phonetic contrasts in a sample of PDS subjects with that recorded in a sample of paired fluent control subjects. RESULTS: Subjects with developmental stuttering had normal MMN to simple tone contrasts but a significant supratemporal left-lateralized enhancement of this electrophysiologic response to phonetic contrasts. In addition, the enhanced MMN correlated positively with speech disfluency as self-rated by the subjects. CONCLUSIONS: Individuals with persistent developmental stuttering have abnormal permanent traces for speech sounds, and their abnormal speech sound representation may underlie their speech disorder. The link between abnormal speech neural traces of the auditory cortex and speech disfluency supports the relevance of speech perception mechanisms to speech production.

In plain English, the authors have looked at the following phenomena: If you play the same sound to someone several times and then change the sound either for duration, frequency, or related phonemes (the sound units that make up our spoken language), a different brain signal is recorded. This signal is the brain detecting that something has changed. But of course you can only know that something changed if you know what has been before! So the brain must have a representation (or memory) of the preceding sound with which it can compare the current sound. And the authors claim that the signals for complicated sound changes is different to people without PDS. They speculate that the PDS brain does not have good representation of sounds amd is therefore not as efficient in quickly discriminating between more subtle sound changes, and this could encourage development of stuttering.

I had a discussion with Per Alm about their paper, and will post some comments in my next post.

Saturday, December 03, 2005

Oblivious to reality

PDS never stops surprising me. It is amazing just how complex humans are despite just being a bunch of cells made out of atoms. :-) Some days ago, I started with a draft for a new post called "Therapy results after 3 weeks". I did talk quite a bit about the therapy in my last posts, and people started asking me about the results. So I wanted to write this, admittedly not very positive statement:

"Last month, I was writing about the Kassel Stuttering Therapy, both from the perspective of a patient and of a researcher trying to improve its efficacy. I also said that I was pretty fluent in the second and third week of the therapy, and was giving talks in front of 50 people or so. So I guess some of you would like to know how I am doing three weeks after therapy. Well, I think it is fair to say that the last three weeks have been a desaster speech-wise. The first week I had several difficult speaking situation asking the tax office to give me back money, being a traffic jam for 3 hours, explaining the dentist in a foreign language, negotiations of a business deal on the phone and so on. So I effectively completely lost it. The real problem is that once I loose it, I have far less control the next time, and I also just forget or postpone practising. Anyway, now I am back practising again and today I started with making short phone calls."

But now compare this statement to a discussion I recently had with my parents:

"Parents: Can I ask you a question? You suddently speak much more fluently. What has happened?
Tom: What do you mean I speak more fluently? I dont think so.
Parents: Yes, you do. What have you done?
Tom: I also did the KST therapy again when I was in Kassel. But I dont think I speak more fluently.
Parents: Come on, Tom. You must be noticing that you have much less blocks and fillers. Why are you lying to us!
Tom: Eeehhh (I start stuttering again) Nnno, not really. I dont really notice this.
Parents: You are strange.."

Somehow those two statements do not really seem to fit well! On the one hand, I talk about the three weeks after being a desaster and they talk about me being much more fluent. Honestly, I did not realise that I had been much more fluent. I think both statements are true. I certainly was very dysfluent in some situations over the three weeks. I know this for sure, because I recorded the phone conversations and listened to them. But one the other hand, I have to believe my parent's statements that I have been much fluent, that is when I was talking to them. So I might well have been more fluent generally, but in very stressful situations dysfluent. The thing that puzzles me is my total ignorance of the fact that I speak more fluently generally. Why dont I realise this? I really must be strange.... :-)

Wednesday, November 30, 2005

Call for participants

Holger Stenzel found this call for participants for the Pagoclone study. Here is the newspaper article:

Researchers at the University of Utah need stuttering adults to help evaluate the effects of pagoclone, a drug that has shown promise in clearing stumbling speech patterns.
At most, 1 percent of the population stutters, and many people who do might be hesitant to take medication, said Michael Blomgren, an assistant professor in the department of communication sciences and disorders at the U. That has made it challenging to recruit participants in parts of the nation where the study already has begun.
"For people that stutter, it's a pretty big problem. . . . It can really be disabling," said Blomgren, who has personal experience battling the disorder.
Drug companies already have tested pagoclone for treatment of anxiety and panic disorders, but researchers found it had beneficial effects on stutterers, with no side effects.
The U. is one of 10 centers nationwide recruiting for the clinical trials.
Potential participants who complete a screening will be asked to take the investigational medication or a placebo for eight weeks, and will receive about $20 per visit. At the end of the treatment period, participants may choose to extend the study, taking the drug for 12 months free of charge.
Those who want more information should call Blomgren at 801-585-6152, or visit (extract from Salt Lake Tribune)

Tuesday, November 29, 2005

Becoming a book reviewer

I have decided to do book reviews on stuttering. So if you have written a book on stuttering, be it research or treatment, please send me a copy and I will review the book. The first book that I will review is called Comprehensive Stuttering Therapy by Phillip J. Roberts: see here. But let me first read the book... :-)

In the mean time, here is a summary from the website:

Therapy for teenaged and adult stutterers

Comprehensive Stuttering Therapy is a stuttering therapy program that you can follow from your home and will enable you to effectively and durably control your stuttering by addressing every single element of the stuttering phenomenon.

Comprehensive Stuttering Therapy will teach you how to relax the muscles of your larynx as well as other techniques directly addressing the speech mechanism. These techniques alone can probably help you control your stuttering in the short run but are not sufficient to ensure you a long-lasting self-sustainable fluency. For this reason, Comprehensive Stuttering Therapy also includes exercises targeting the other aspects of the stuttering phenomenon.

A comprehensive approach

Stuttering is a complex condition involving much more than the disfluencies that non-stutterers notice. The bulk of the stuttering phenomenon is hidden. Stuttering affects the whole person. Stuttering includes destructive feelings, perception and emotions such as shame, embarrassment, guilt, low self-esteem, frustration and fear of particular speaking situations. The stuttering phenomenon also encompasses unusual behaviors such as irregular breathing patterns, eye contact avoidance and word substitutions.

Treating such a complex condition requires a comprehensive and holistic approach that addresses each and every aspect of the phenomenon. If one aspect of the stuttering phenomenon is left unchecked, the stutterer is very likely to relapse after a few weeks or months.

Comprehensive Stuttering Therapy is not a cure

Stuttering is not a disease and therefore cannot be cured. Stuttering is a condition that, with the help of adequate stuttering therapy, can be successfully treated and controlled. Comprehensive Stuttering Therapy, as its name implies, is a therapy and will help you control and eliminate stuttering.

Understanding stuttering

Comprehensive Stuttering Therapy provides in plain English the basic knowledge needed to be able to grasp the complexity of stuttering. Stuttering can be compared to an iceberg: 90% of the mass of an iceberg is hidden below the surface. Similarly, the bulk of the stuttering phenomenon is hidden. Non-stutterers are usually only aware of the disfluencies (the tip of the iceberg) and have no idea about what is going on 'below the surface'.

Stutterers know that stuttering means a lot more than disfluencies. Stuttering is a complex issue composed of many different elements: negative feelings and emotions, strange behaviors and misconceptions that affect every aspect of a person's life. You will learn how these different elements interact with your speech, reinforce your disfluencies and sabotage your efforts to become fluent. Stuttering obviously cannot be effectively and durably eliminated if these hidden elements are ignored. Effective stuttering therapy should consider and address the entire stuttering phenomenon.

Thursday, November 24, 2005

Politically incorrect criteria for research

In a previous post, I have listed ten criteria to judge the quality of research from the article Science and pseudoscience in communication disorders: criteria and applications. In this post, I want to explain how I judge research articles without having read them! Of course, reading them gives you extra information on the quality and is recommended. But shockingly my judgment on the quality of the research rarely changes upon reading the article. In my next posts, I will then focus again on real PDS research, because my last posts were a bit too general.

Here are my "politically incorrect" criteria to estimate quality:

1. Age and status of author. The older the researcher, the higher his seniority (e.g. being a professor), and him being first author, significantly increases the chance that the piece of research is irrelevant and wrong! There are several reasons: Older researchers or professor often become managers from their mid 40s onwards and leave the real research work to their students. Thus, they typically have not in depth thought about the research, are out of touch with new literature, and new techniques. They also live in a bubble in the sense that no-one dares to contradict them as they want to finish their PhD, get a letter of recommendation, or fear their influence on powerful research committees. Moreover, professors have often worked on one theory for 20 years, and find it emotionally very difficult to give up their theory as it means having wasted 20 years of their life on a wrong idea! Of course, there are also professor who defy this.

2. Not well known universities. The less well known the university the more likely the research and researchers are not very good. I have been at several universities during my career as a student and researcher, and there are clear differences. Of course, there are good people and research at not well known universities, but I were rarely see some.

3. Conflict of interest. If the author has a conflict of interest, the research is often suppressing weaknesses. A conflict of interest might be researchers who research the treatment approach they have themselves created, a pharmaceutical company pushing a product, a professor who is a strong supporter of a theory.

4. Too precise figure. This is a big warning sign. For example, if I read things like "74.1% of all children recover naturally", I know that the researchers are not very good scientists. This is the same as saying: we project that the building will cost 1'4637'748 Euro. The number is far too precise for the phenomena it describes. This criteria might sound trivial, but it shows that the researcher have not properly digested the number. So when I write about children stuttering, I just say 70 or 80% recover. Actually good scientists often quote LESS PRECISE figures than mediocre scientists!

5. Keyword "holistic", big name in PDS, "revolutionary", "cure". Good researchers never use vague terms. They also don't refer to big names like "Sheehan said that" or "Einstein said that". I am only interested in the argument itself and not who made the argument, at least not in a research article.

6. No quantitative background. I find that research (even if it is in soft sciences) by people who did not have a quantitative training is worse. They do not properly understand statistics and fall prey to logical fallacies much faster. During their intellectual developmental years, people with quant training, they were constantly faced with reality checks. If you miss a sign in an equation, the answer is wrong. If your thinking is sloppy, your computer code wont run. This made them aware of their own failings in terms of thinking. Good scientists constantly feel stupid and make mistakes. So when they approach subjects that are not very quantitative, they are much more suspicious and double check their thinking.

7. 3D graphs for 2D data. This is a big warning sign for me, but most people probably think I am a bit pedantic here. Often, non-scientists represent data in a very non-efficient way. For example, the share of each country in terms of population. See above, a circle would be enough to represent the data, but often a pie chart (3D) is used, even though the third dimension contains no information whatsoever. The key to finding new pattern is to only look at efficient visual representations. If you start a puzzle, you will also clean the tables and only keep the pieces and distribute them across the table.

8. No effect size is calculated. Imagine you want to find out whether people with PDS have a higher weight than the normal population. The standard procedure is to get two groups of about 20-30 people matched by age, sex, and so on, and weight them. Then for each group you have a distribution of weights, and you can perform a t-test to compare both distributions. This t-test will tell you whether the two samples could have come from the same distribution. It gives you a p-value which indicated how likely the difference between the two groups is due to a statistical fluctuation i.e. whether the difference is only by chance. Typically, if p is lower than 5% or 1%, the likelihood of the difference being by chance is 1 in 20 or 1 in 100, and researchers talk about a statistically significant difference. And almost always the story ends here. But not only it is important to know whether the two distributions are different, but also how big the difference is. For example, the weight of people with PDS might only be 100 grams more, and is therefore negligeable as an effect. Therefore the effect size is computed and this is true measure of determining whether there is a strong signal.

9. Small samples and anecdotes. Too small sample or anecdotes are always a big warning signs. UNLESS it is a detailed case study.

Monday, November 21, 2005

BSA Research Committee

On Saturday, I attended the tri-annual meeting of the research commitee of the British Stammering Association (BSA). In 2002, I was a trustee of the BSA and started the committe, as I felt that there should be a closer cooperation between researchers themselves and with the national association, the BSA. It was quite a struggle to get it up running and people interested in it, but now the contrary is true! :-) If you want to know more, please read here.

We voted in two new members, Dave Rowley and Sharon Millard. We also discussed the 2006 edition of the BSA Vacation Scholarship. And we will produce a 2006 Annual Review of PDS research.

Thursday, November 17, 2005

Pseudo or not

Today, I want to tell you about a paper by Finn, Bothe, and Bramlett. The title is Science and pseudoscience in communication disorders: criteria and applications. Their aim is to make sure that clinicians can distinguish between pseudoscience and science of treatments. Here are their 10 criteria:

1. Untestable: Is the Treatment Unable to Be Tested or Disproved?
2. Unchanged: Does the Treatment Approach Remain Unchanged Even in the Face of Contradictory Evidence?
3. Confirming Evidence: Is the Rationale for the Treatment Approach Based Only on Confirming Evidence, With Disconfirming Evidence Ignored or Minimized?
4. Anecdotal Evidence: Does the Evidence in Support of the Treatment Rely on Personal Experience and Anecdotal Accounts?
5. Inadequate Evidence: Are the Treatment Claims Incommensurate With the Level of Evidence Needed to Support Those Claims?
6. Avoiding Peer Review: Are Treatment Claims Unsupported by Evidence That Has Undergone Critical Scrutiny?
7. Disconnected: Is the Treatment Approach Disconnected From Well-Established Scientific Models or Paradigms?
8. New Terms: Is the Treatment Described by Terms That Appear to Be Scientific but Upon Further Examination Are Found Not to Be Scientific at All?
9. Grandiose Outcomes: Is the Treatment Approach Based on Grandiose Claims or Poorly Specified Outcomes?
10. Holistic: Is the Treatment Claimed to Make Sense Only Within a Vaguely Described Holistic Framework?

I think these ten criteria are useful tell-signs, and the more criteria a treatment approach fulfills the more suspicious the clinicians or patient should be about its claims. But I think it is also important to note that even if the research supporting a treatment approach can be considered scientific, this does not necessarily mean that the findings are correct. At the end of the article, they mention that they have tested several approaches and the SpeechEasy device and Fast ForWord qualify as pseudoscientific, and for example the Lidcombe approach as scientific. This is a bit ironic as I have pointed out here and here that their statistics is no quite right! But I guess the big big difference is that I am able to formulate arguments that question part of the outcome study for Liddcombe, were the study pseudo-scientific, I could not do so.

I need to read the article a bit more careful, and will report here.

Wednesday, November 09, 2005

Stutter and make money!

For all those women who stutter, here is the perfect business opportunity for you to make money... Got the link from Einar's blog.

If you are nervous about the job interview and need some practise, I will be happy to provide Einar's phone number! :-)

Tuesday, November 08, 2005

How much is false?

I nearly finished this post and my browser crashed!!! I hate software (and of course myself for being so terribly human and not saving work...)

In my last post, I spoke about an article by John Ioannidis in which he proposes tell-signs for an increased likelihood of false research results. Before launching myself into a discussion on whether PDS research shares most of these tell-signs, I want to make you aware of another similar but PDS specific article by Finn, Bothe, and Bramlett. The title is Science and pseudoscience in communication disorders: criteria and applications. I met Patrick Finn once in Montreal, and once in Tucson (Arizona). I was at a conference on human consciousness (much more interesting than PDS) and we had lunch in a Greek restaurant. I never met Dr Bothe, but I know that she has written an article some years ago in which she basically said that most (or was it all?) research on treatment of PDS is false. So this article fits well into her agenda. :-) I will have a look at their article and give my feedback on the blog. But here is already the abstract:

PURPOSE: The purpose of this tutorial is to describe 10 criteria that may help clinicians distinguish between scientific and pseudoscientific treatment claims. The criteria are illustrated, first for considering whether to use a newly developed treatment and second for attempting to understand arguments about controversial treatments. METHOD: Pseudoscience refers to claims that appear to be based on the scientific method but are not. Ten criteria for distinguishing between scientific and pseudoscientific treatment claims are described. These criteria are illustrated by using them to assess a current treatment for stuttering, the SpeechEasy device. The authors read the available literature about the device and developed a consensus set of decisions about the 10 criteria. To minimize any bias, a second set of independent judges evaluated a sample of the same literature. The criteria are also illustrated by using them to assess controversies surrounding 2 treatment approaches: Fast ForWord and facilitated communication. CONCLUSIONS: Clinicians are increasingly being held responsible for the evidence base that supports their practice. The power of these 10 criteria lies in their ability to help clinicians focus their attention on the credibility of that base and to guide their decisions for recommending or using a treatment.

So, let me come back to Ionannidis' tell-signs. I will go through all of them, and discuss whether they are relevant to PDS research. Research is less likely to be true..

a) when the studies conducted in a field are smaller; YES. Most research studies have quite small sample sizes.

b) when effect sizes are smaller; NA. Actually most research does not include effect sizes! I even have the impression that many researchers are not aware of the effect size concept. Everyone seems to compute the statistical significance of their results (for example group difference between people with PDS and control subjects), but rarely whether the results like group differences are negligible or large. Crash course in stats: Statistical significance states how likely a result is not a coincidence but a true effect. Effect size states how large the effect is. Thus, you have have a statistical significance, but the effect might be too small to be interesting.

c) when there is a greater number and lesser preselection of tested relationships; sometimes YES. This situation does happen in some studies. For example, if all aspects of a subject are recorded and search for correlation with outcome. And the more variables you have the more likely you have a statistically significant result by chance.

d) where there is greater flexibility in designs, definitions, outcomes, and analytical modes; big YES. Due to the very nature of PDS, your creativity is your limit. Definitions are vague, e.g. severity of stuttering, success in therapy.

e) when there is greater financial and other interest and prejudice; NO and YES. Generally, there are no great financial interest in PDS research, except of course drug trails. Prejudice certainly exists, but not in the sense of ignoring blatantly obvious facts but more falling victim of logical fallacies and group thinking in the absence of blatantly obvious facts.

f) when more teams are involved in a scientific field in chase of statistical significance; MAYBE.

PDS research has many of these tell-signs. In my next post, I will tell you more about Tom's tell-sign of bad research articles.

Sunday, November 06, 2005

Theorists and reality

If you are a regular reader of my blog, you will surely have noticed that I am more of a theorist/scientist than a practician! To my benefit, I can claim that I have been practising since the age of 3, and have become really good at stuttering! But of course I have very little therapist experience, in fact none. I attended many group meetings, talked to therapists, or read relevant literature. So I guess I fairly well have experienced most aspects of PDS in adults (but not from the side of a therapist), but my greatest lack in experience is disfluent children. I have never really seen any, or talked to them.

So last Friday, I had some second-hand experience on what it is like to be a parent that has a disfluent child. At the local swimming pool, I met an old friend of mine, and his daughter (had) stuttered. He told me that she had stuttered for some months, and they took her to a speech and language therapist, who didnt really do anything except tell them that they should not judge her speech and that she should start first grade earlier (in Luxembourg it is possible to delay first grade by a year if you are close the the age limit). Then three days before she went to school, she suddenly stopped stuttering, and only stutters occasionally but far less. I find this sudden recovery (if it proves to be permament) amazing. Why is this happen so sudden? I always had been in the back of mind, the knowledge that children suddenly start stuttering and suddenly stopped stuttering. But hearing it first-hand from my friend, makes this phenonema more important. How can this fit with my view that PDS starts with a defect and recovery is compensation within the brain. How could this happen so suddenly? I asked a similar question here with an answer by Prof Bosshardt (here). I can understand that stuttering can suddenly start but that is suddenly stops is a bit too much for me. This would suggest to me that levels of neurotransmitters might be relevant. I need to think more. Also, is it really so sudden or is this just parents approximating reality into more neatly defined periods.

Oh I forgot, my friend also said that a few days before his daughter's recovery he decided to repeat every single sentence in the same ways that she had spoken it for one day. He said that this made her aware how she spoke, but he didnt know whether this has anything to do with her recovery.

Friday, November 04, 2005

Is most PDS research false?

You should have a look at John Ioannidis' article published on PloS Biology, the free access science journals: here. He claims that most research findings, especially those in fields similar to PDS, are wrong:
There is increasing concern that most current published research findings are false. The probability that a research claim is true may depend on study power and bias, the number of other studies on the same question, and, importantly, the ratio of true to no relationships among the relationships probed in each scientific field. In this framework, a research finding is less likely to be true when the studies conducted in a field are smaller; when effect sizes are smaller; when there is a greater number and lesser preselection of tested relationships; where there is greater flexibility in designs, definitions, outcomes, and analytical modes; when there is greater financial and other interest and prejudice; and when more teams are involved in a scientific field in chase of statistical significance. Simulations show that for most study designs and settings, it is more likely for a research claim to be false than true. Moreover, for many current scientific fields, claimed research findings may often be simply accurate measures of the prevailing bias. In this essay, I discuss the implications of these problems for the conduct and interpretation of research. (found link on Lubos Motl's blog)

A lof of PDS research satifies nearly all of these criteria. In my next post I will go through the various arguments.

Tuesday, November 01, 2005

Even Neo-Nazis and Anarchists stutter

Over the weekend I was in Goettingen (Germany). I met up with Dr. Martin Sommer for Sunday lunch. He is main author of the Lancet article that reports structural anomalies in the brain of people with PDS for the first time. Check also this summary on PDS. This has now been more or less confirmed by research from Foundas, Jaencke, and Watkins in principle, but the location varies a bit. He is currently finishing his Habilitation, which is a bit like a super PhD thesis that qualifies you to become professor at a German university. He has been quite busy with his clinical work and research in other areas, and even asked me to update him on the latest research. I suggested he should read my blog! :-) A PhD student of his is doing work on PDS, but he said that it is too early to talk about. He also said that for the defence of his Habilitation thesis he will have to review all the latest research. We talked about many things, but not very detailed: 2-loop theory, evolutionary disadvantage of people who stutter, psychological/Freudian theories (which we thought can only be helpful for secondary symptoms), drugs (see here). We also spoke about speech therapies. Martin also has PDS, and we exchanged ideas and our experiences, and we spoke about the research work I did and might be doing soon on the data and therapy of the Kassel Stuttering Therapy.

My stay in Goettingen has been interesting in another way: here. That Saturday the NPD, an extreme right-wing political party (close to neo-Nazis) had an authorised march through the city, and left-wing anarchists (mainly from Berlin and Hamburg) decided to block the march by any means. Unknown to me, their romantic encounter happened in the street and neighbourhood where I stayed the night! I arrived at 4 in Goettingen and the whole place was blocked with literally thousands of policemen. After 2 hours of driving around to evade police road blocks, I left the car in a car park at the train station, and made my way on foot. At that time, passions had calmed, apart possibly from a punkish old leftish woman complaining to the German railways about their inefficient services! It was a bit spooky and surreal atmosphere as I crossed police lines, burned-out trash containers, and broken street signs. Half another hour later, town council worked had cleaned everything, and Goettingen looked again like a peaceful German version of Cambridge or Oxford.

Writing this blog also means trying to find PDS in anything that moves. So I guess even neo-Nazis and anarchists stutter. I am wondering whether there are some famous bad guys in history or now that stutter?? You always only see positively famous people who stutter. I know one "bad" guy who stuttered: the sprinter Ben Johnson. Interestingly enough, he was never included in the Famous People who Stutter list. And he is/was pretty famous, beating Carl Lewis in 100 meters with world record, only to be found guilty of performance-enhancing drugs. I saw a TV documentary where he speaks/stutters and says that he stutters since the age of 4. If you know any bad guys who stuttered, let me know! After all, people with PDS are not worse but also not better than others!

Saturday, October 29, 2005

KST: Day 14-17 More transfer

The last days of the therapy went by quite fast. Not much new. The point was to practise transfer situations like phone calls, talking in front of people (we visited a school of speech and language therapists), and daily tasks like ordering in a restaurant or shop. Most patients were very fluent, except possibly two. Some used the techniques, some to some extent, and others didnt. We were recorded on video. On the last day, everyone had to conduct an interview with by-passers in a shopping mall. It was amazing to see the videos and compare them to the before-therapy recordings of the same situation. Especially one video struck me. Before therapy he was stuttering severely and really came across as a troubled man: no smiling, lots of tension, somber look. But the video at the end of the therapy was very different. He didnt stutter, smiled at the by-passer, and was relaxed. He was someone you would happily invite to your barbecue to get the vibes going... Just shows how much a speech impediment can impact on the expression of the real personality.

And now a more critical note. Most were very fluent, but virtually all had seeds for relapse. The point is that many who experienced fluency did not use the techniques a lot. And from my own experience I know that sooner or later the old habits and blocks are coming back slowly unless you keep them at bay and constantly (even obsessively) praticise and use the techniques. I am wondering whether therapists can predict who will relapse and who will not. I once asked Eva Heuer who worked for the KST who said that she could not really detect a pattern. I should really ask all the therapists about it. If any of you is a therapist, let me know whether you think you can. I did the analysis of the KST data for long-term outcome, and we couldnt find anything except severity of stuttering before therapy, which is not very promising.

Friday, October 28, 2005

Franz's claim for fame

The traffic to my blog has constantly increased since the beginning in May. There are also more people who comment to me on my blog. One of them is Frank Jassens, but everyone calls him Franz. He had the audacity to complain that I had never mentioned his name before in the connection with the KST!!! So this post is for you, Franz!

Franz has done the therapy 3 years ago, and now works as a therapist and project manager for the KST. He now speaks very well without any apparent symptoms to me. I have not known him before therapy, so I cannot judge the severity of his stuttering before. But his video before therapy is quite infamous for its pronounced secondary symptom which was quite situational dependent. I am always curious to ask why people think they have become more fluent. Franz said that he has consistently used the speech techniques over several months after the therapay, and it just went away...

This post would be incomplete without mentioning the true love in his life: his "Schaeferhund" or German sheperd dog. :-) I always see them together. They fit so well together, also colourwise... He also has a girlfriend, but I havent really met her yet! ;-)

If you also want to complain that you have not been mentioned on my blog, please send me an email. I would be delighted to write a post on you!!!!!!!!!!

Tuesday, October 25, 2005

Changing behaviour.

A recurring theme on my blog is that stuttering therapies are behavioural therapies and that behavioural therapies always show good short-term results, but rather poor long-term outcomes. It is easy to get someone fluent but difficult to maintain the fluency. I possibly obsessively compare stuttering to overweight and drug addiction. You can loose weight rather quickly with a strict diet over 2-3 months, and you can loose your physical and psychological addition to drugs, be it alcohol, smoking, or heroine, within weeks.

However, the hidden bleak fact about behavioural therapies is relapse. It is the norm that people relapse rather than the exception. I always cite an article, which followed 500 people during a diet over 2 years. They volunteered to participate in a diet, and virtually everyone benefited. I remember reading about an average weight loss of about 10 kg. The controlled diet went over three months. At the end of this period, the patients were given instructions to maintain their lower weight, in short: balanced meals with a lot of vegetables, and sport activities. What wer the result? Only 5% mantained the lower weight, and on average the weight was above the weight before the diet!!!

I have been thinking about the dynamics leading to relapse. I view the human being as two different entities interacting: the cortex (which does the rational thinking), and the limbic system (which generates the emotions). During a diet, my cortex will run the show if I decline a piece of chocolate, and my limbic system will win whenever I eat the piece of the chocolate. The irony really is that everyone on a diet has made the rational long-term choice to go on a diet, but the emotional short-term urges might have different plans.

A solution is to reduce or eliminate the emotional short-term urges. Let me just briefly say something positive about emotional short-term urges. They are essential for our survival. Our brain needs to make us feel hungry, angry, or lonely to ensure a better survival. We also need to feel comfort in our habits, the things that we know from past experiences. Without our habits, we could not live a simple life without thinking about every tiny activity. The problem is that our limbic system cannot think, but only associates to each activity or situation or idea an emotion like good or bad irrespective of its true usefulness. Also, it is essential that we have trouble to unlearn a habit quickly.

Using this framework, I see two ways of reducing or eliminating the emotional short-term urges. First, a stronger traffic from the cortex to the limbic system, i.e. your cortex send more and stronger messages to your limibic system and overriding the limbic system. Second, the urges are weaker or eliminated by changing the emotional association to an activity or situation or idea.

To achieve a stronger traffic from the cortex, you need to tell yourself constantly what you want, that means constant broadcast the right message: I like to eat an apple instead of chocolate. Chocolate made me sick last time. I eat chocolate tomorrow but not now. (Dont worry if you lie to yourself, your limbic system buys the lie.) This self-talk goes under the name of auto-suggestion. Write down the things you want to think, and repeat them to you over and over again. To achieve a re-programming of the limbic system, you need to teach the limbic system the right association you want to have. For example, you are scared of spiders. You need expose yourself bit by bit several times in a quick succession to the situation, and slowly you will learn a new association.

So how does this understanding help with avoiding relapse? I want to generalise this question a bit and include: How can I make myself not forget to speak slower, make more pauses, or use a gentle onset? First, use auto-suggestion and write down messages that you want to broadcast to yourself constantly, for example: I like to make pauses, or Pauses make me feel comfortable. Say them to yourself as often as possible with positive emotional intensity... ideally you do this broadcast obsessively. Second, you need to get into real situations and learn a positive association to your new behaviour. For example, if you get nervous or scared when you pause, go on the street and ask people for a direction, say Hello, and then count until 2 until you ask for direction. do this 10 times in a rapid sucession. if you want, start doing this method first on your own, then ask your dog whether he would be willing to listen, then a friend, and so on...

I am 100% sure that these methods work very efficiently when used. At the beginning, you detect no significant impact, but after 2-3 weeks you will be amazed how you are suddenly doing (or even have to do) these things automatically. I have tried myself and the methods work. But there is one big problem, that I also experienced a lot. I forget to do it or somehow invent millions of excuses for not doing. :-) You either need to have a determination to follow through. Also, guidance from a therapist ideally in the settings of an intensive therapy course is essential. It is easier if you are put under some pressure and in an environment with low distraction.

The question is also how much pressure should a therapist exercise on a patient that, for example, wants to use a technique but consistently failed to do so. One way would be to put pressure on the patient and tell the patient off and say that s/he must work harder. Another way would be that patient need to realise him/herself and if they fail to use a method, they dont really want to change. I believe the best way forward is the middle way in that the therapist should make the patient manipulate him/herself via autosuggestion and provide a very strict framework to change association to activities or situations. So you can tell a patient to slow down, or can give feedback "you have not slowed down" and work indirectly by adding "I speak slower" in the auto-suggestion repertoire.

OK. That is enough. Many ideas, but possibly not 100% coherent... :-)

KST Day 10-13: Tom's twin brother

The last days have been filled with excercises aimed at practising the learned techniques in realistic speaking situations.

Saturday was the information day of the KST. The idea is to invite the families of the participants and people who have voiced interest in the therapy. Every participant had to introduce him/herself and talk a bit about the past days. Videos from before therapy were shown. The differences are really striking, but of course the yard stick is the long-term success. I saw my video from three years ago, and I stuttered quite a bit on the phone: long and intense "ehhhhhhh"s. But during the presentation I was fluent. I was speaking using gentle onsets and I slowed down. It went quite well. I even made the audience laugh as I told them that the person who they saw stuttering severely was actually my twin brother!! It is not me. I am not a freak :-)

On Sunday and Monday, everyone had to go home and explain to their work colleagues or class mates what they had been doing in the therapy. The feedback was mostly positive, but some family members did not like the new way of speaking of the participants. The idea at the KST is to speak in a new way at least in the beginning to speak without symptoms and slowly mix it with natural speech.

Today (Tuesday) everyone was back in Kassel, and we prepared for a talk that everyone is giving in front of a group of speech and language therapists.

Friday, October 21, 2005

Freak show

I am probably getting into trouble for writing this post. It is about the great variability of secondary symptoms stuttering is producing, and how people react to their own stuttering. For example, here at the Kassel Stuttering Therapy, patients see their own video and are shown other people's video (with those people's consent of course!). A few dont want their video to be shown. But the majority is initially shocked by their symptoms, especially as they do not realise they do certain things. But now after a few viewing, some (including myself) really find them seriously comical really. (I can say it as I stutter myself!). Some examples include people who: slap themselves on the cheek to get out of a block, swing the arm to get going, twist the tongue out, say "ehhhhhh" every 3 seconds for half a second (THAT IS ME), make extreme face grimaces, or turn the head upwards as if a fishhook from an angler had caught their right lip. If you dont know about stuttering, you would just be like "Oh my God, what a freak". But then, they put down the phone and say "Oh this was a bad phone call. Lets go for lunch" in perfect fluency, no the slightest symptoms. Or when they use the techniques, all symptoms are just gone, and out comes eloquent speech with utter calm, not the slightest sign of freakiness. It still amazes me after so many years.

Maybe I should do a Top Ten Worst Stuttering Symptoms... Sorry I do not take life too seriously... And for those who stutter and do find it embarassing and painful. I think it is important to get some emotional detachment. After all, if you find it embarassing and painful, your avoidance and suffering will be far greater than for someone who can also make fun of him/herself...

KST 7-9: Transfer

We have started to transfer the learned techniques into a real life environment. Every patient had to introduce him/herself briefly to students at a police training school, and then ask questions about the work of the police. The police students also asked questions about stuttering. We also practised making phone calls, and we went into the town centre and practised on by-pasers or shop assistents. This is quite a novel and frightening experience for many people who stutter. But I think most mastered the situations quite well, and many experience for the first time in their life some more or less inner calm in talking in such situations.

The biggest problem really is to use the techniques (like gentle onset or connecting syllables) in all situations. Most patients have no problem using the techniques when asked to do so. And they speak very well without any apparent symptoms, even for many people with severe stutters. But once the therapy session is over, they immediately switch to the old speech pattern with stuttering symptoms. This is also one of the main criticism of fluency shaping therapies. Patients have to learn a new way of speaking, this new way sounds and feels strange, and patients will revert to the old way of speaking (sorry stuttering). It is certainly true that change requires hard work, and for some especially with severe stuttering the end product will be decent fluency but with some unnaturalness to the speech like long onsets or slowing down speech. On the other hand, this is hundred times preferable for the listener that hearing hAAAAAArd and loooonnnng blocks and seeing pronounced face grimaces. But for people who experience relative fluency and stutter without severe and long blocks, the costs of fluency at the cost of unnaturalness might seem and feel too high. However, the answer of fluency shaper would surely be that they can use softer version of the taught techniques and mix them with their natural speech. A careful listener might spot the gentle onset but the average listener will not. The real difficulty is to find the right balance, and this is hard work.

Wednesday, October 19, 2005

Joe on 2 loop

Here is a interesting comment from Joe D.:

There is the 2 loop theory of stuttering which comes close to your own theory. Riley et al. (1997) discussed the medial or inner loop system which may be “abnormal “ in PWS. The authors suggest that this inner loop is concerned with spontaneous speech and is regulated by the striatum (part of the basla ganglia involved in the planning of movement and of other processes of executive function).

The more “active” the striatum, the more fluent the speaker. However, increased dopamine in the striatum will cause hypometabolism (less activity) and prevent it from working efficiently. This is the basic assumption of the dopamine theories of stuttering.

Riley and McGuire’s work states that the striatum can be avoided all together by using the outer loop. The outer loop is “activated” by using fluency shaping techniques, sticking a device in your ear, chorale reading or basically anything different from the typical speech process.

This theory fits in nicely with the new theories on drugs and stuttering. Basically, if you reduce the levels of Dopamine in the striatum pharmacologically , then it will work more efficiently. joe D.

Yes, I am aware of their work, vaguely. Actually Per Alm mentions them in his article and PhD thesis. It makes a lot of sense, and gives flexibility to accomodate of the idiosyncracies of PDS. However, I am still unsure how this fits with structural and functional differences in PDS brains. But certainly, we are moving into an area where theories (like this one) can be tested in experiments.

Tuesday, October 18, 2005

KST Day 5-6: Go signal

I had several chats with Alex von Gudenberg, and how to structure an evaluation of the therapy. We also exchanged ideas on which elements are crucial and which ones are not. The best method would obviously be to start from a well-establish theory of PDS, which we do not have right now. However, I think that one theory or rather observation is an important one and likely true: stuttering is caused by a failure to initiate the first sound. This is a conceptual statement. A more physical statement (but slightly different issue) is that the region that sends the motor plan to the muscles does not receive a GO signal (to initiate the sound). Why this is so is another story and not directly relevant. If we assume that the stuttering event starts with a failure to initiate the (first) sound, a therapy should reduce the occurence of such failures. Fluency shaping might do it by teaching people a gentle onset. The effect is 1) the gentle onset trains the ability to initiate (as you have to concentrate before speaking) AND 2) allows to start gently which makes it mechanically impossible to block. Van Ripper style therapies might also train the ability to initiate by doing block modification. So possibly both very different approaches work on the failure to initiate, but dont know it! The big question is whether any other exercise would more efficiently train this, possibly only phonation could help. I think this is also what Prof Ingham has been/is trying. He sent me an article some time ago. I have to re-read it again... Sorry this paragraph is a bit messy, it need to get it clearer in my mind.

Regarding the therapy, we have moved into using the speech technique in more realistic settings. Currently, we over-do the technique (gentle onset, connecting syllables), and the patients need to practice also outside the therapy session. However, that´s very difficult for some. Also for me, I want to apply it all the time, but I often forget... An hour ago, I recorded myself unintentionally, and when I listened to the recording I did not apply the techniques all the time and had dysfluencies. But the strange thing is that I did notrealizee my dysfluencies, only after I listened to the recording. But I am pretty good at getting into the techniques. Some patients have trouble to stay in technique more and show stuttering symptoms. But even for them, if they repeat it again, they become pretty fluent. It is really amazing how fluent even the worst stuttering can become... This still leaves me wondering whether a cure (or much more efficient therapy) is not possible in some way. If they can speak fluent, it must be possible to get this sorted somehow.

Sunday, October 16, 2005

Fluency without psychology

This is a question on a ISAD conference page to which I replied:

Most of stutterers are almost fluent if they speak with loud voice being alone. Also I can forget my stuttering and speak expeditiously and absolutely fluently when I am alone in room or in car etc - I know that in fact nobody can hear me, although I imagine that I talk to other people. When I really talk to other people (even friends), I start to stutter quite strongly. WHY I can’t in this case to speak fluently like being alone? WHY I can’t transfer exercising situation to real life? How could I talk to other people as fluently as alone? Actually I have some answers (psyhological tension, etc) but I’m not satisfied with these answers. Still I do not realise very well, why I can’t talk to other people in the same fluent way like alone. Maybe this point (speaking with other people in the same way as speaking alone) could be bigger part of stuttering therapy for adults.

This is one of the most intruiging aspects of persistent developmental stuttering. It is the main challenge for people who believe that psychological issues are only consequences or re-enforcers of symptons. Many things about PDS are still uncertain, but I think there is/are explanations.

1) We need to realise that such effects not only happen in PDS. For example, a friend of mine is a doctor, and he told me that many Parkinson patients have very little shaking before the doctors enter the room, and heavily start shaking during the visit! Or nearly deaf people also have good and bad days and good and bad situations where their hearing deteriorates or becomes better. But no-one would suggest that the variability of their condition is proof of a psychological origin of their condition.

2) Situations with increased stuttering are typically situations where the brain has more work to do. When you are alone, your brain has far less work. But when you are around people (or think that you are around people), your brain has so much more workload: applying a social filter, coordinating the appropriate body language, increased stress, increased tension, responding to other people's ideas, future scenario analysis of your planned message and so on. If you think of stuttering as an unstable speech system, it is clear that more work means less stability. Like a road with road repairs is free of traffic jam on a Sunday, but not a Monday morning at 8.

3) Point two only explains why in some situations we should stutter more on average. But it does not say why sometimes we can be very fluent, even in situations of more workload. So I now distinguish between variability of stuttering, and fluency-enducing effect. Often, we mix the two: we put "less stuttering" equal to "more fluency". The two might well not be the same!!

4) According to a theory developed by Per Alm, Uni Lund, broadly speaking, there might be TWO pathways in the brain that regulate speech: an automatic one, and an active-control one. When you focus on your message, your brain runs the speaking for you (you speak without thinking about how to speak), and when you are focused on how you want to speak, you take control of your speech system. Once you have accepted this theory and you assume that PDS is instability of the automatic mode, everything makes more sense. If a person with PDS uses his active-control mode (like speaking with a foreign accent, imitating someone, speaking loudly, speaking in chorus, speaking in rhythm and so on), s/he becomes more fluent, because the unstable automatic mode is not used or only partially used. This would in my view explain the phenomena. OK, the details might turn out to be different, but at the very least I (or rather Per Alm) have shown that it is POSSIBLE to explain the effect WITHOUT mysterious and vague reference to psychological factors.

Check out my previous posts on Per Alm's work: here, and here.

KST Day 2-4: Facing reality

Not too much has happened during Friday and Saturday. (Sunday was a day-off). I concentrated mostly on the therapy, and did not spend much time on the therapy evaluation scheme. But I do keep a diary and write down my impressions. I make a list of suggestions that could improve the therapy. From tomorrow onwards, I will spend more time of the general framework of the therapy evaluation. My idea is to treat a therapy as a list of therapy components, and each components has different properties like a description, time needed, financial costs, applicability to everyone, dependance on other therapy components, and so on. I am working on the list. And the idea is to fully document the therapy in this way. And then I want to collect as many therapy components as possible from other therapies. And then it is easier to compare. Hey, that is the theory... not sure how it works out in practise.

So over the last days I have been practising on the computer, and during free time. It is very difficult to practise during the free time. Many patients do not manage, forget and speak normally. I have the impression that unlike the therapy 3 years ago I manage to apply the technique more consistenly during free time. The most frightening session was on Friday afternoon. We had to watch the videos made before the therapy. And several patients were very taken back by the own stuttering video. This was the first time that they saw themselves stuttering: shaking their heads, putting out their tongues, making facial grimaces, many filler, and so on. But everyone survived the ordeal... I am a strong believer in that you need to let everyone face reality... no sugar coating of reality... OK I make the exception for people who cannot handle the experience psychologically. But this is may be 5% at most, and it is the art of the therapist to know who that is.

Thursday, October 13, 2005

KST Day 1

I spent most of the day as a patient, and practised the fluency shaping techniques on the bio-feedback software, Flunatics. As I had done such practise for a whole year three years ago, I reached a very good level within a day. I think my major challenge is to use it during normal speech. But I think/hope it will be much easier than 3 years ago.

Concerning the KST evaluation project, I didnt have much time today, and only spoke briefly with Alex, the founder of the therapy. But I was chatting to several therapists and patients informally. I also listened to myself, and my old memories and thoughts on which part of the therapy I find useful and which I dont came back. The real problem is really that everyone has (good) ideas, but it is just too chaotic. There is a real need for project management and define processes to collect, analyse and takes decisions. What I will do over the next days is to write out all the important dimensions of a therapy compoments and evaluation. Here are some example: Cost-benefit ratio, crucial for therapy or not, long-term effect with training?, explanation of usefulness and more. I also have to look closer at what success is, and which dimensions may exist, e.g. greater fluency, less avoidance, fewer effort for maintenance, etc.

The KST deal

I am currently at the Kassel Stuttering Therapy (KST) in Germany; I spoke about the KST before: here, here, and here. Alex von Gudenberg, the founder of the intensive therapy course, has invited me back to Kassel to give critical feedback on the therapy. The KST started seven years ago, and they have been implementing the original therapy concept ever since. As the storms of starting-up a therapy and getting it approved by the health insurers are now settling, Alex has decided that it is about time to look back over the last years, use the experiences made and see whether improvements can be made to the therapy. Such a non-dogmatic attitude is certainly admirable. However, his choice of letting me drive this effort is certainly a dangerous one, giving my reputation of zero hesitation to question someone´s cherishedly held beliefs if they do not make sense logically or clash with reality!! :-) Over the next 2 and a half weeks, I will work out a detailed project plan on how to conduct the review most effectively. The actual work would then be done over the coming year; either by me, or someone else, possibly with the help of students doing their thesis or traineeship.

But this is just half of the deal. In return for my help, I will participate in the therapy as a client over the next 2 and half weks. I did the intensive therapy course nearly three years ago. I benefited from the therapy a lot fluency wise, but the effect gradually weakened. I practised a lot (every day 10-15 minutes fluency shaping techniques on the bio-feedback software for a year), but less on real people. I am the kind of person who gets easily distracted by other things (like defending an idea or suddenly having a new idea) and completely forgets about everything. And I am also very very slow in loosing habits and learning new concepts, but once I get it I can be lethally effective! Well, that´s my construct, which might also make no sense logically and clash with reality! :-)

So over the next 2 and half weeks, I will post ideas on therapies, and possibly about my progress on my own therapy. Now how schizophrenic is that? Being the patient and researcher on the patient at the same time... But a warning... I wont tell you everything... I dont want to go into KST interna, but rather foccus on general key issues that needs addressing for the review.

Tuesday, October 11, 2005

A magazine article

I have written an article for a friend of mine, who is president of the Luxembourg Society of Psychologists. It will appear in their quarterly magazine.

Why do people stutter?

This question has been and is puzzling people who stutter, people who hear them stutter but speak fluently themselves without even thinking how they speak, and the health professionals who try to help alike. Scientific and folk theories have been floating around through the centuries. Aristotle, who stuttered himself, thought of a malfunctioning tongue. Or, the people who stutter are just extra nervous when speaking, because everyone experiences stuttering in extreme situations. Psychoanalysts see clear underlying psychological conflicts arising from childhood, or suggest neurosis: people who stutter might subconsciously derive gains. Asking people who stutter does not help much either. They generally have no clue why they stutter, but they can often predict when they will stutter, but not always. Treating stuttering has again been a true source of ingenuity. Some German surgeons advocated cutting out a part of the tongue. Another treatment involved not talking for 5 weeks. Yet other treatments include talking in rhythmic manner, antidepressants, or searching why you subconsciously want to stutter.

Stuttering is a puzzling disorder. People who stutter report that they are unable to say certain words even though they know exactly what they want to say, but they just cannot say them. Stuttered speech involves hesitations, blocks, fillers like ehhhh, word substitution, avoidance of eye contact, face grimaces and more. Paradoxically, people who stutter are able to speak completely fluent under certain circumstances, e.g. talking alone, singing, speaking with a foreign accent, or in rhythm. On good days, they can be fluent, and on bad days they stutter on every second word. Sometimes they are stuttering mildly, but suddenly have a block and become much more disfluent, or the other way around. Some stutter openly and do not avoid speaking situations. Others stutter mildly, but their life is filled with fear and anxiety and centres around avoiding speaking situations whenever possible. They switch words around, get other people to make important phone calls, forget the answer even though they know the answer, order water rather than b-b-beer, and love emails. They look and behave like everyone else, not less intelligent, more nervous, or more psychologically disturbed. Stuttering is not a language problem, because people who stutter do not have language problems. It does not really seem to be a speech problem either, because people who stutter have the ability in some circumstances to speak completely fluently.

There are a few established facts about stuttering. Stuttering is really only a symptom of a disorder, persistent developmental stuttering or PDS. It is persistent, because it is not a temporary inability to speak fluently but persists from early childhood onwards. It is developmental, because it starts in early childhood when the child develops his or her speech capabilities. At around the age of 3, some children go through a period of disfluency. Most children recover naturally to become fluent speakers, but about 20% do not and their stuttering persists. They quickly develop secondary symptoms and suffer psychologically and socially. There are also forms of acquired stuttering, which is due to a stroke or neurological incident in late adulthood. About 1% of a population has PDS. There are about three to four times more men with PDS than women. Occurrence of PDS often runs in families, and there are even extended families in Cameroon and Pakistan where most family members stutter. There is much more to PDS than overt stuttering. The analogy of the iceberg is often used to suggest that much suffering is hidden underneath unknown to the listener. Paradoxically, the bigger handicap arising from PDS is very often the psychological and social avoidance and suffering rather than the stuttering itself. Stuttering tends to increase when the workload of the brain increases during stress and emotionally or grammatically difficult speech.

There have been many treatment approaches, but none can be considered a cure. However, the consensus is that someone having from PDS can significantly reduce the psychological and social suffering and become an effective, if not always a fluent, speaker. Unfortunately, relapses in fluency are common occurrence, and lasting success requires a lot of patience and efforts. Often, people make sensational improvements and are shown on TV, but many experience a relapse when the camera is switched off. The effect is rather similar to a diet: the difficulty is not to loose weight, but not to regain weight within a year! It also depends on the individual, and whether their stuttering is mild or more severe, and how much avoidance behaviour exists. There are two main schools of thoughts to make people more fluent: teach them speech techniques that insure fluent speech or teach them how to stutter more mildly. In fluency shaping, the patients learn how to speak more fluently by using techniques like gentle onset, slowed down speech, connecting syllables, and more. As they speak fluently, they do not have secondary symptoms and psychological and social issues should dissolve. In stuttering modification, the patients learn to deal with their stuttering to consciously allow stuttering but with less tension and reduction of secondary symptoms. Both approaches can be effective, and often have similar results. Another approach is to mainly work on psychological and social issues. This can be effective for very mild stuttering (or patients with psychological issues), and helpful for more severe stuttering in reducing the significant handicap that psychological and social effects brings about, but rarely does it bring fluency. All three approaches can happen within self-help groups, intensive stuttering therapy programs, or with a local speech and language therapist. However, local speech and language therapists often have little experience with treating stuttering and resort to their own creativity to treat. Therefore, the author strongly recommends to only work with a therapist who has specialised in PDS. Finally, treatment with drugs is gaining grounds. Several drugs seem to reduce stuttering but with some side effects. Clinical studies are underway.

Why do people stutter? Stuttering is a highly complex disorder on a social, psychological, behavioural and neurological level with all levels interacting with each other. Despite a century long effort, it is fair to say that no-one really understands the underlying mechanism of stuttering nor does anyone have a theory of stuttering that can be and has been verified. Better therapy has mostly come from trial and error rather than a fundamental understanding of the disorder. The problem lies deeper than overt speech production, and probably involves language, speech planning and execution inside the brain. Unfortunately, until recently, there had been no useful tools available to study the living brain. But, it is now possible to look directly at the living brain in detail and a revolution is currently under way. The emerging consensus is that the brains of people with PDS show clear activation and structural differences to the normal population. Firstly, at rest, the activation level of the PDS brain compared to control subjects are the same. Secondly, there are clear differences during speech in the activation levels in various regions. Thirdly, in comparison, the speech-dominant left brain is less activated and the right brain is more activated. Fourthly, even during fluent speech of people with PDS, there are differences in activation. Moreover, several groups now claim that the left brain also shows a structural abnormality (which would fit with the different activation level). This is promising news, but theory building becomes important now. The experimental results need to be separated between causes and effects. On another front, genetics research has signalled out chromosomes (packages of genes) that are directly correlated with occurrence of PDS. Stuttering tends to run in families to the same degree that for example increased risk of breast cancer or heart attacks runs in families.

What is the most likely mechanism for stuttering? The best guess is that something goes wrong on the neurological level at around an age of three, at the time when the language and speech region need to produce grammatically correct sentences. There might exist a structural weakness, most likely influenced by genetic predisposition or a neurological incident (like a blow to the head or an illness). Then the young brain must cope by recruiting other brain regions, most likely in the right brain. This compensatory system corrects the deficiencies, but is more sensitive to interference. This may explain why people with PDS can be perfectly fluent and will stutter when the compensatory region suffers from work overload during stress and emotionally or grammatically difficult speech. Childhood disfluency evolves by learning secondary symptoms like blocks, reduced auditory feedback, fillers, avoidance and fears. The secondary symptoms reinforce and make stuttering much worse, which in turn creates very complex and very individual psychological reactions and social behaviour, which in turn maked stuttering a serious handicap.

The next years are going to be exciting as our understanding of PDS will get better. But, there is no doubt in the author's mind that a better understanding of stuttering on a fundamental level is our best possible way forward towards more efficient therapy with fewer relapses. Every breakthrough in any field has been marred by setbacks, errors and delays. The key to success is to never ever give up!

More information are found on the following websites (English) (German) (French)

Contact email:

Friday, October 07, 2005

My fav ISAD pages

I am spending more time on the ISAD conference. It is interesting, but I really dont like the format of the posts. There is no possibility to correct spelling mistakes (which really annoys me), and the system does not allow for carriage return so the post is one biiiggg paragraph....

Here are the most interesting discussions:

General questions

On Genetics

On medication

Saturday, October 01, 2005

The ISAD online conference

You should definitely check out the International Stuttering Awareness Day Online Conference 2005 , which is an annual event organised by Judy Kuster, the good soul of Stuttering Online!

There are many articles on there and discussions with the authors are possible. So I have taken this opportunity to post some questions or comments, and will do so until October 27th. I LOVE to ask questions, as this is far easier than answering them!

You should also have a look at her website The Stuttering Homepage, which is the largest collection of stuttering-related material on the Internet. It's always worth looking around from time to time. What I do miss is that it is really a collection of material and not an meta-analysis or synthesis of material. But I guess that is not the aim of the website anyway.

Friday, September 30, 2005

IFA 2006 Conference

The deadline for abstract submission for the IFA 2006 Conference is TODAY. The conference is probably the biggest conference on stuttering. IFA is the Internation Fluency Associations, an organisation for everyone interested in fluency disorders. Note that ISA is the International Stuttering Association, the umbrella organisation of the national associations. I am not a member of IFA yet. But the conference fees are lower for IFA members, so I might join!!! :-)

I am currently working on two submissions. The first one is for a presentation on the statistical analysis of outcome data of early childhood intervention, and the other one is a 1-hour workshop on Using the Internet for Research. Unfortunately, I dont have time to convince someone else to join in in the workshop....

Thursday, September 29, 2005

BUKO - first day - continuation

I am now back home. After BUKO, I attended another conference, in Frankfurt and on hedge funds: you know those people who make millions on the stock market! :-) Let me talk a bit more about the first day at BUKO.

In the afternoon, there was a discussion panel and presentations. First, representatives from different therapies answered questions on stuttering and described their respective therapies. There was a representative from the self-groups, Andreas Starke advocating van Riper approach, Alex von Gudenberg advocating a fluency shaping therapy, and a speech and language therapy advocating "Individual Psychology" (IP). IP has certainly provoked the strongest reaction from both panel members and audience. So let me talk about it.

I found a description on "Individual psychology":
Stottern ist aus individualpsychologischer Sicht eine Neurose. Dabei wird davon ausgegangen, dass die Diagnose Neurose dann berechtigt ist, wenn Krankheiten und Krankheitssymptome als Alibi verwendet werden, um soziale Mängel zu entschuldigen. Der Titel „Ja ..., aber“ steht deshalb für eine neurotische Formel, deren Antwort immer „Nein“ lautet, z.B.: „Ja, ich würde noch ein neues Studium anfangen, aber mit diesem Stottern ist das unmöglich.“
Die Ätiopathogenese des Stotterns ist weiterhin unklar. Es ist auch nicht eindeutig erwiesen, ob Stottersymptome immer primär auf der Basis einer neurotischen Fehlentwicklung entstehen. Unbestreitbar ist jedoch, dass jeder stotternde Patient psychosomatische Persönlichkeitsstörungen hat und Stottersymptome oftmals unbewusst oder bewusst eingesetzt werden, um einen sekundären Krankheitsgewinn zu erzielen. Dies führt dann zwangsläufig zu einer kontinuierlichen Fixierung der Symptomatik. Hier sind individualpsychologische Therapieansätze, insbesondere bei Erwachsenen, äußerst hilfreich. Grundlage der individualpsychologischen Sichtweise ist dabei, dass Stottern als Ausdruck frühkindlicher Entmutigung in den ersten fünf bis sechs Lebensjahren entsteht und so ein bestimmter Lebensstil entwickelt wird, der das Verhalten des Menschen im Verlauf seines Lebensweitgehend bestimmt. Wenn es daher gelingt, den Patienten in die Lage zu versetzen, seine individuelle Problematik zu erkennen und seinen Lebensstil zu analysieren, ergibt sich daraus auch die Möglichkeit, Verhaltensmodifikationen zu erreichen und so auch die Stottersymptomatik günstig zu beeinflussen.

Here is a quick translation:

In the IP framework, stuttering is a neurosis. A diagnosis of a neurosis is justified whenever illness and symptoms of illness is used as an alibi to cover for social defficiences. The title "Yes,.. but" stands for a typical sign of neurosis, e.g. "Yes I would like to go to university but it is impossible due to my stuttering". The mechanisms and causes of stuttering are still unclear. It is not clearly proven that stuttering symptoms always start out as neurotic developments. However, unquestionably every stuttering patient has psychosomatic personality troubles and that stuttering symptoms are often unconsciously or consciously used to obtain secondary gains. This leads to a obsessively continuous fixation on symptoms. In this respect, IP therapy approaches prove to be very sucessful. According to IP, stuttering in childhood is a symptom of early disencouragement in the first 5 to 6 first years which leads to a specific lifestyle that determines a human's life. If the patient is able to acknowledge its individual problems and lifestyle, a possibility opens up to change his behaviour and reduce the stuttering symptoms.

This approach did not prove very popular with the audience or panel members. Especially Andreas Starke dismissed it strongly and came examples. Also, a woman stood up and was visibly upset by what she thought was a completely ridiculous theory. She said that she stuttered not because of any deeper psychological problems or of problems bigger than that of the average person, she was just unable to translate her thoughts into speech. And that she was not deriving any open or hidden advantages from stuttering. But there was another member of the audience who said that he is convinced that stuttering is due to fear in the first place.

So what does Tom think? I actually spoke with two therapists doing IP during lunch. I really had the impression that they felt a bit on the defensive. I explained to them that I think that one must separate between therapy and theory. The troubling thing about IP is really that it makes clear statements about the nature of stuttering, which I can honestly not support. In fact there is much evidence against it like genetic predisposition, brain imaging studies showing structural problems, good results of the Lidcombe problem, etc. Having said this, I am NOT saying that IP is a useless therapy, on the contrary. Many aspects, including reviewing one's constructs and how stuttering affects them, are useful to reduce the handicap that stuttering brings with it. As I said many times before, the biggest handicap does not come from disfluency but from the social and pyschological SECONDARY effect. And IP does deal with them. So in my view, the therapy is OK but based on a wrong and outdated theory.