Wednesday, December 26, 2007

My 2008 posts

I am sorry that I haven't been posting for 2 weeks. Here are a few posts that I am thinking of writing about.

- the best research published in 2007.

- my predictions for 2008.

- that small defects can lead to big effects.

- Barry Guitar's book that I am currently reading and the things I disagree with, especially on environment and temperament.

- follow-up on the Zyprexa case study.

- any new research published.

- more focus on the importance on secondary symptoms

- the relevance of the Valsava mechanism

- looking into whether I can reycle some old but relevant posts, because readers rarely read the older posts.

- more on genetics and whether they say something about environmental influences.

- my suspicion on temperament being important in childhood stuttering.

- watching out that the Lidcombe people don't oversell their approach with flawed studies.

- computing the probability that a child who just started stuttering has a younger sibling born at the same time.

- the study that will compare between Lidcombe and demand and capacities therapy approach.

Any other suggestions?

Wednesday, December 19, 2007

A speech and language research blog

I just found this blog on speech and language research, but they are definitely slower in breaking the news than TheStutteringBrain though they are obviously more generalist. See here.

Tuesday, December 18, 2007

The history of stuttering

It is just amazing how creative people are in drawing wrong conclusions, from wikipedia:
For centuries stuttering has featured prominently in society at large. Because of the unusual-sounding speech that is produced, as well as the behaviors and attitudes that accompany a stutter, stuttering has been a subject of scientific interest, curiosity, discrimination, and ridicule. Stuttering was, and essentially still is, a riddle with a long history of interest and speculation into its causes and cures. Stutterers can be traced back centuries to the likes of Demosthenes, who tried to control his disfluency by speaking with pebbles in his mouth. The Talmud interprets Bible passages to indicate Moses was also a stutterer, and that placing a burning coal in his mouth had caused him to be "slow and hesitant of speech" (Exodus 4, v.10)
Galen's humoral theories remained influential in Europe into the Middle Ages and beyond. In this theory, stuttering was attributed to imbalances of the four bodily humors: yellow bile, blood, black bile, and phlegm. Hieronymus Mercurialis, writing in the sixteenth century, proposed methods to redress the imbalance including changes in diet, reduced lovemaking (in men only), and purging. Believing that fear aggravated stuttering, he suggested techniques to overcome this. Humoral manipulation continued to be a dominant treatment for stuttering until the eighteenth century. Partly due to a perceived lack of intelligence because of his stutter, the man who became the Roman Emperor Claudius was initially shunned from the public eye and excluded from public office.
In eighteenth and nineteeth century Europe, surgical interventions for stuttering were recommended, including cutting the tongue with scissors, removing a triangular wedge from the posterior tongue, cutting nerves, and neck and lip muscles. Others recommended shortening the uvula or removing the tonsils. All were abandoned due to the high danger of bleeding to death and their failure to stop stuttering. Less drastically, Jean Marc Gaspard Itard placed a small forked golden plate under the tongue in order to support "weak" muscles.
Italian pathologist Giovanni Morgagni attributed stuttering to deviations in the hyoid bone, a conclusion he came to via autopsy. Blessed Notker of St. Gall (ca. 840–912), called Balbulus (“The Stutterer”) and described by his biographer as being "delicate of body but not of mind, stuttering of tongue but not of intellect, pushing boldly forward in things Divine," was invoked against stammering. Other famous Englishmen who stammered were King George VI and Prime Minister Winston Churchill, who led the UK through World War II. Although George VI went through years of speech therapy for his stammer, Churchill thought that his own very mild stutter added an interesting element to his voice: "Sometimes a slight and not unpleasing stammer or impediment has been of some assistance in securing the attention of the audience…"
For centuries "cures" such as consistently drinking water from a snail shell for the rest of one's life, "hitting a stutterer in the face when the weather is cloudy", strengthening the tongue as a muscle, and various herbal remedies were used. Similarly, in the past people have subscribed to theories about the causes of stuttering which today are considered odd. Proposed causes of stuttering have included tickling an infant too much, eating improperly during breastfeeding, allowing an infant to look in the mirror, cutting a child's hair before the child spoke his or her first words, having too small a tongue, or the "work of the devil."

Trying out medication: Week 10

Here is the week 10 update from one reader who is trying out Zyprexa (Olanzapine):
It's been 10 weeks since I started on the Zyprexa and so far I am a fan. I had the blood tests at week 6 and there were no elevated levels, so that was a relief. I increased from 5mg to 10mg at week 6 and the sedation effects kicked in but are now waning again, so thats a relief. I have gained around 10 pounds in weight, however I have been less active over the last 3-4 weeks, so I am sure that if I had been more commited to an exercise plan, the weight gain would have been less (very busy at work)

With regards to the speech - most if not all of the secondaries have gone, no more twiches and facial contortions which is a relief. I find that my anxiety about speaking situations has reduced and as a result I dont worry about rearranging my words in advance. Most of the "well", "actually" and "you knows" have gone to assist with the onset of speech - things seem clearer now. I would say that my speech has improved by 80% and with any remaining blocks, I can 'plow' through them easier with less struggle.

So far, I am a fan, and according to my doctor, the full benefits will not be evident for another few months.

Monday, December 17, 2007

Gene studies more tricky

I was quite enthusiastic about genetic studies, but I now realise that it is a bit more tricky than standard genetics.

There are two ways to look for genetic influences in a disorder. First, twin studies show the strength of the genetic component by comparing the probability of both twins having the disorder for the monozygotic (share the same DNA) and heterozygotic case. Second, you can look at affected families or populations to locate responsible genes in the chromosomes. The key is to associate a trait with the disorder. For example, blue eyes or red hair are good traits.

However, stuttering is more complicated. In stuttering it is not clear what the trait is. Stuttering is not really a trait as such, but symptoms, or I think what geneticists call a state. The real trait could be a dysfunctional motor region or the failure to initiate sounds properly. And, recovered stutterers might also have this trait but they do not stutter because they compensate well. And there might be many different traits leading to the same symptoms. Therefore, overt stuttering is only roughly related to the trait, and the signal strength of any research like twin studies or family trees will be significantly reduced.

Saturday, December 15, 2007

Holger visits TheStutteringBrain

Holger Stenzel is visiting me in Luxembourg over the weekend. He is very interested in stuttering medication and writes a lot about his experiences and on current medication trials and research in forums. He took Olanzapine (Zyprexa) in a self-trial for two and a half year. He said that the duration and strength of block seems to have been reduced but he didn't experience a continuous improvement of his speech. He is currently not taking any medication.

Thursday, December 13, 2007

Should females treat males?

There are many more female than male therapists and most patients are male. As we all know men and women are different, though old-fashioned science-ignorant feminists and post-modernist pseudo-philosophers would argue that gender is a purely social construct. But there can be no doubt that the body is different, the brain is different, and the mind is different. Luckily, nature has given us just about enough overlap in interest and abilities to live more or less happily side by side. :-)
I think few female therapists have the ability to behave outside of their nature, and naturally put more emphasis on areas and behaviours that work for them but that do not work for most men (with some exceptions as usual). Men do not mind talking about psychological and social issues, but we have an internal timer that rings after 15 minutes. We want to move on to something else. We do not need someone to listen to us, but someone that can help us solve our problems. We don't need someone who is constantly telling us Well done, but someone who shows us what we should do and in no uncertain terms tell us when we get off course. We want to do things and not talk about things.

Why are there so many women?

Most of the speech and language therapists are female, and most people who stutter are male. The differences are most apparent in Western Europe, especially the UK. The reasons for the high proportion of female therapists in Europe is of course not sexual discrimination against men, though this fallacious argument applies for all areas where men are in a higher proportion! More women than men are interested and naturally inclined to working with children with speech and language development (and with adults to a lesser degree), though the interest and ability argument of course does not apply for any area where men are in a higher proportion!

The situation is somewhat more balanced in the US. They also call themselves speech and language pathologists, and I believe that they have a more science-based education and not just based on administrating treatments. There is also a markable difference between Western and Eastern European countries, with the Eastern European countries being more science oriented. I see it at conference all the time: they usually don't run away when I talk science or stats! There is still some respect for physicists. :-)

And the proportion of males increases with seniority and focus on research as opposed to treatment.

The European hotbed of femaleness in treatment must surely be the Michael Palin Center in London where I have yet to meet a male therapist; it's just pure estrogen. :-)

Wednesday, December 12, 2007

Botox your stuttering away

I never stop being surprised about the extent to which people are searching for a cure or reduction of their stuttering: walking on all four, not speaking for 3 days, remove a part of the tongue, and so on. Now I have come across articles on botox and stuttering: see here at Judy's page. As always the studies show some promising results, and as always they are deeply flawed.

Tuesday, December 04, 2007

Comedy or not.

YouTube classifies stuttering as comedy, and Leys is battling them. You can sign an online petition against the YouTube classifications here.

Monday, December 03, 2007

Pagoclone outlicensing negotiations

One reader, Ora from New York, called Indevus directly and asked them! Here is what he wrote to me about his re-collection of the phone call. I want to make clear that I was not part of this phone call and cannot verify any statements:
Current plan is to partner the drug with a larger firm which specializes in central nervous system drugs. Pagoclone is a legacy drug for Indevus. It went through tests for generalized anxiety disorder. They discovered in the process that it helped stutterers who participated in the trials, and that the benefit subsided after treatment was stopped. They’ve gotten some good info from the Phase II open label extension (since mid-2006).
In the meantime, Indevus' corporate focus has changed. They’ve acquired another company this year. Their corporate focus has shifted toward urology and endocrinology, and pagoclone no longer fits. Although they are still positive on pagoclone, they’ve had to make a corporate decision whether to proceed with it themselves, or devote their attention to drugs within their core focus. They decided to outlicense pagoclone to another company.
The outlicensing talks are “in late-stage discussions”, and they hope to agree with partner by end-of-year. They are in “end stage negotiations”. Timing is uncertain to a degree, but they’re hopeful that they’ll ink the agreement by end-of-year. Might extend into first quarter 2008. They recommend keeping an eye out for Indevus press releases regarding the outlicensing deal, and then closely follow the plans of the new company, including contacting their corporate communications department.
One encouraging fact is that the safety data is very good. This data has come not only from the 132 participants in the stuttering study, but also from the previous studies for anxiety and premature ejaculation, so altogether they have safety data for (I think) about 1600 people.
They have had “end of phase II meeting” with FDA. FDA has asked them to do pediatric studies or incorporate into their trial design; if not, the drug would undoubtedly be prescribed by doctors for off-label use. In the US, any FDA-approved drug can be prescribed by a doctor for any condition, not just the approved diagnoses. So the FDA wants them to design their tests to include children so they have some real data instead of guesses and extrapolations.
I asked what the Phase III study would look like. It would depend on the new company. The design of the trial would depend on discussions with the FDA, and would be adjusted as necessary “to get this through”. The FDA has already been giving them a lot of feedback.
There is nothing really new. It is important to watch their actions on the outlicensing as opposed to their words. We cannot judge the state of such negotiations and need to wait until a public announcement by both companies.

Does fever reduce stuttering?

I have just read a fascinating article: see here.
Fever can temporarily unlock autism's grip on children, a finding that could shed light on the roots of the condition and perhaps provide clues for treatment, researchers reported on Monday.
It appears that fever restores nerve cell communications in regions of the autistic brain, restoring a child's ability to interact and socialize during the fever, the study said...He said the fever effect was believed found only in children, whose brains are more "plastic" than those of adults.
Before doing the same experiment with children who stutter, let's look for anecdotal evidence. I don't really know whether I am more fluent when I have fever. I have never really paid attention as a kid, so I cannot exclude the possibility. Does anyone of you observe such an effect?

Saturday, December 01, 2007

A more sophisticated look at Pagoclone

bwapplegate posted a more sophisticated and more optimistic analysis of the current state of Pagoclone than I did in my last post, here! He seems to be an analyst. Here is his analysis:
Indevus (IDEV) typically does outlicensing deals on compounds they are developing. They've outlicensed several of the ones in their pipeline, including Sanctura and Sanctura XR, which are their flagship medications.
Outlicensing essentially entails up front payments to cover the costs of the Phase III trial in return for the ability to sell the drug once it is approved. Thus, IDEV is looking for a big pharma to come in and offer XXX million for the rights to the medication. They'd give milestone payments - to initiate PIII trials, at the completion of enrollment, at the submissison of the NDA to the FDA, and on approval. After that, IDEV would typically get a royalty payment based on sales of IDEV.
This situation is interesting because:
-IDEV has a colorful past, in which it was tested as a med for GAD and panic disorder but failed. Most people think that the success of pagoclone will not be for stuttering, but for off label use for anxiety.
-Trial design and cost issues. Stuttering trials are somewhat difficult to pull off. There are hazy outcome indicators, difficulties in standardizing patient accrual, and other trial issues. the Phase II trial took something like 15 months to enroll 120 subjects over 15 sites. That's not exactly a high enrollment rate.
-The FDA wants the medication tested on children as part of the approval process. this complicates the trial design, and further complicates the trial and significantly adds to the cost.
I do think that they ultimately will partner with someone in the next quarter to 6 months and that the trial will proceed after that. My sense that IDEV is trying to get a sweetheart deal.

Friday, November 30, 2007

Bad news for Pagoclone

Unfortunately, I have bad news to report. Some time ago, I reported here on my suspicion of a delay for the Phase III trial of Pagoclone which was supposed to start in Early 2007. I speculated that Indevus might consider the risks and investment as too high. I also warned that they would not announce such a delay or stop, but that we would only know about it by absence of any news, especially in the Year End report. That's exactly what is currently happening. They have just published their Fiscal 2007 report (see here on CNN), and Pagoclone (unlike in the 2006 report) is nowhere mentioned. Except when Dr Cooper from Indevus cryptically says:
Finally, through our other business development activities, we successfully outlicensed aminocandin and IP 751 and we have discussions ongoing for the outlicensing of pagoclone, all designed to further focus our efforts in urology and endocrinology
Compare his statement in last year's report:
We are also optimistic about the positive results of our pagoclone Phase II study in stuttering and the upcoming initiation of our Phase III clinical program.
Unfortunately, my instincts tell me that the "on-going discussion" is a way of spinning bad news. Instead of saying "we are not going forward with Pagoclone and this is our third aborted attempt to find a disorder for Pagoclone", they say "we are in on-going discussion for outlicensing of Pagoclone. We are doing good because we make money by out-licensing". You can always say that you have on-going discussions, and of course they are secret so you can't reveal any details.

There was an analyst conference call today. Surely, some analyst is going to ask the question. If they are any good... If anyone has the link or transcript, please let us know.

Saturday, November 24, 2007

Do bats stutter?

Have a look at this news article on bats and stuttering. That's how you sell your research. Bats seems to have simple forms of speech capabilities, but whether this leads to a better understanding or treatment of stuttering is far fetched. But it might be interesting to study whether some stutter, indeed. Here is the text:

SAN ANTONIO, Nov. 5 (UPI) -- Scientists in Texas hope the study of bat brains may eventually lead to better hearing aids or new treatments for human speech disorders like stuttering.

Using ultrasonic microphones, researchers at the University of Texas and Texas A&M have discovered bats combine sounds into a basic sort of syntax that they use to communicate and express their individuality, The San Antonio Express-News reported Monday.

"There are no animals that can kind of speak," says Michael Smotherman, a neurophysiologist at Texas A&M who is trying to identify the areas of the brain the bat uses to coordinate sounds into songs.

Smotherman hopes his research will lead to better understanding of stuttering a dysarthria, a speech disorder characterized by poor articulation.

At the University of Texas in Austin, bat researcher George Pollak is trying to understand how the bats process the social communication sounds they hear and how they recognize individual calls.

Pollak says his research could lend itself to developing hearing aids that differentiate and screen out background noise.

Thursday, November 22, 2007

Recovered and persistent kids show abnormalities

I have already spoken about the important brain imaging work by Soo-Eun Chang from Christy Ludlow's group at NIH, and the department of Speech and Hearing Sciences at the University of Illinois at Urbana-Champaign. Let me put it up again as it is very important. They looked at the brain of children who do not stutter, who recovered from stuttering, and who did not recover:
Previous imaging studies in adults with persistent stuttering found left white matter deficiencies and reversed right-left asymmetries compared to fluent controls. We hypothesized that similar differences might be present indicating brain development differences in children at risk of stuttering. Optimized voxel-based morphometry compared gray matter volume (GMV) and diffusion tensor imaging measured fractional anisotropy (FA) in white matter tracts in 3 groups: children with persistent stuttering, children recovered from stuttering, and fluent peers.
The results:
Both the persistent stuttering and recovered groups had reduced GMV from normal in speech-relevant regions: the left inferior frontal gyrus and bilateral temporal regions. Reduced FA was found in the left white matter tracts underlying the motor regions for face and larynx in the persistent stuttering group. Contrary to previous findings in adults who stutter, no increases were found in the right hemisphere speech regions in stuttering or recovered children and no differences in right-left asymmetries. Instead, a risk for childhood stuttering was associated with deficiencies in left gray matter volume while reduced white matter integrity in the left hemisphere speech system was associated with persistent stuttering. Anatomical increases in right hemisphere structures previously found in adults who stutter may have resulted from a lifetime of stuttering. These findings point to the importance of considering the role of neuroplasticity during development when studying persistent forms of developmental disorders in adults.
Let me rephrase in common language:

1) Brains of both recovered and persistent stuttering children show structural abnormalities.

2) Right side abnormalities in volume increases found in adults are absent in (recovered and persistent) stuttering children.

3) Stuttering in children is associated with left side abnormalities, and persistence specifically associated to white matter abnormalities.

Let me lean out of the window by saying that

1) The existence of right side abnormalities in volume increases in stuttering adults but not in children strongly suggests compensatory activities that made some right side regions grow.

2) These regions are mainly to blame for relapse in adults because they are more or less hard-wired.

Wednesday, November 21, 2007

How should the others behave?

I got an email from a student in speech sciences and she was asking about my opinion on what listeners should know when engaging in a conversation with someone who stutters.

1) There are no golden rules; different pws prefer different behaviour.

2) It would be good if they knew the basic facts about stuttering, e.g. high heritability, likely neurological cause, not due to nervousness, high variability of dysfluency from completely fluent to severe blocking, inability to say exactly what you want to say and so on.

3) Better understanding of stuttering itself automatically leads to better behaviour.

4) I am against rules on behaviour as they tend to make people mechanically following them.

5) The pws can do most to ease any tension and he/she has also a responsibility here. Unless you want to be the helpless victim. And after all, most have never seen someone like you before, so you should inform them that you won't bite them. :-)

6) It is practically impossible to educate the whole world.

What is your opinion?

Monday, November 19, 2007

Progress by death

In physics, we have the saying "Progress is not achieved by changing people's mind but by people with wrong ideas dying out!" or "Professors with disproved theories never change their mind, they die out." At the core of this effect is the mental bias people have for the theory they believe in. The mental bias is stronger the more you have invested. Just imagine a professor at the age of 50 spending 25 years of his or her life working a specific method or theory, and it is not working. I rarely see them give up, because they have too much at stake. There are some exceptions, but then they never had very strong beliefs.

And the same is true in stuttering. Very little people will change their mind, for example that stuttering might have a physical basis despite overwhelming evidence.

Thursday, November 15, 2007

Should we go to China?

A reader wrote in response to my last post on the 2008 ISA conference in China:
Be interested on your views on China, read your blog. I am just a bit concerned about China - still seems to me to anything but a free country. I have a problem supporting an international meeting where your blog would probably be banned if you said anything critical of the government.
I agree that China is not a free and democratic country, and they would probably ban my blog if I said something critical. Especially, regarding my views on the Tibet and Taiwan issues. However, if I were the China ruler, I would probably also restrict freedom of speech and especially of movement of people around China with force if needed. China needs a smooth and slow transition from a state-planned economy and society to a more open society with a market economy. I suspect that the rulers follow this path even though they (have to) publicly endorse communism. But I could be wrong. Also, China is not a lawless dictatorship, and there is a rule of law in that you cannot easily be arrested without reason or evidence, thrown to prison and executed. Though the laws themselves obviously restrict political freedom and the people have no power to influence them. Russia is in a similar situation. I strongly believe that with the market-based economy leading to a greater exchange with other societies and improvements of quality of life the democratic forces are getting stronger and win in the long-term. So in a sense, I agree with both sides: keep on pointing out human rights abuses, and keep on controlling society to ensure a smooth transition.

Regarding support for a conference in China, politics does not play a direct role in my view. The conference is about people meeting up: stutterers, therapists, researchers, and others. It is a sign that China is opening up. (Of course, the Olympics is coming in 2008.) The conference could also have a significant impact for Chinese stutterers. It is important to talk about stuttering in the Chinese media, too. China has 1.3 billion people, 13 million stutter, and if only 1% reads my blog, I have 130'000 readers as opposed to 150 per day! :-)

To conclude, I support a conference in China but will not shy away from voicing my dissent on human right issues. What's your opinion?

Wednesday, November 14, 2007

北京2010 年 (Beijing 2010)

The next world conference of the International Stuttering Association is going to be in Beijing in 2010. I am convinced that they will produce a great conference. I have always been amazed by the sheer endless determination and intelligence of the Chinese people (apart from some political lapses... some of which might be understandable given the historical baggage). I wonder how traditional Chinese medicine treats stuttering. I have never been in China, but I definitely plan to go one day. So maybe the conference would be a good excuse. Here is the text from the ISA website:

It's official, the next World Conference of the International Stuttering Association will be held in Beijing, China in 2010. Yes, the newly formed Chinese Stuttering Association will host this world event in cooperation with the China Rehabilitation Research Center, Beijing Normal University and the China Medical Academy so it is sure to be a another well organised, well atttended, exciting and informative event following on from the previous ISA congress successes in Croatia, Australia, Belgium, South Africa, Sweden, Germany, USA and Japan so start planning ahead now to be part of this inspiring event. If you have any way you can assist our Chinese organising committee please contact the head of the conference organisaing committee, Zong-Shan Li at More information when it comes to hand.

Tuesday, November 06, 2007

Ben's brother stutters

This is a really cool song with a very cool BritPop/Rock sound. Check out Ben's brother's website and MySpace. I am wondering whether someone of them is stuttering or not. I am convinced they will hit the chart, if they haven't already. Just look at their very professional website, they are surely getting pushed by a record company.

Thx to Einar for the tip!

Wikipedia entry

I changed the Wikipedia entry on stuttering to reflect the latest empirical evidence from brain imaging.
There is little evidence of structural differences in the brains of stutterers. However, differences in auditory, linguistic and motor functions have also been proposed to account for the disorder. Research is complicated by the possibillity that differences noted between stutterers and non-stutterers are the consequences of stuttering rather than a cause.[11]
"There is clear empirical evidence for structural and functional differences in the brains of stutterers. Research is complicated somewhat by the possibility that such differences could be the consequences of stuttering rather than a cause, but recent research on older children confirm structural differences thereby giving strength to the argument that at least some of the differences are not a consequence of stuttering.

I am sure someone is going to undo it again because it doesn't fit with their views. But I gave the references to the two new research articles by Watkins et al and Chang et al. I also noticed that they take out a link to my blog when I include it for further reading!!

Sunday, November 04, 2007

Get a daily update on stuttering research!

If you want to get the latest research articles without reading my terrible comments and including those that I find boring, you can search "stuttering" at the PubMed website. The website has all published articles from the last decade or so.

You can even register at the website, and get an daily update for a search on stuttering. Just go to the site, register, confirm your email, do a search on "stuttering", "Save Search", and link to an email alert.

Friday, November 02, 2007

The taboos of the stuttering community

Every community has its taboo topics or words. Taboo topics are aspects out of our reality that are best not to be spoken about, certainly not to be discussed. Here are a few statements where you can get in trouble for even suggesting them for debate though they are not obviously wrong and at least debatable. In Japan: "The Japanese army is responsible for forcing Chinese women into prostitution during World War II." In Germany: "Not all Nazi policies were bad, e.g. the construction of Autobahns or the sense of community and purpose." In the US: "There is not reason why the US should have a special relationship with and blind support of Israel." In China: "The Taiwanese and Tibetan people should be allowed to decide their own destiny". Even in the no-taboo porn industry, there is a taboo topic: STDs!

Also in scientific debates we have taboos as the Watson and Larry Summers sagas show. You cannot ask the following questions without fear of being sacked. Here are a few examples: Do Blacks have on average a lower IQ and Jews on average the highest IQ among races? Are there innate differences between males and females that could help explain the high representation of male university science professors / Nobel Price winners and CEOs?

Do not expect a reasonable debate on any of these topics. The pattern is generic. First, the questioner is labeled a racist, Nazi-sympathiser, unpatriotic, sexist, or anti-semitic. Second, therefore these people are evil and stupid. Third, therefore they must be wrong. End of debate.

What are the taboos in the stuttering "community"? Let me know what your thoughts are. Here are a few candidates:

- Many stutterers prefer not to listen to people who stutter, and do not want a partner who stutters.

- Stuttering is a handicap, and stutterers cannot do every job.

- There are stutterers who did bad things. For example, we have Ben Johnson, the Canadian super sprinter who was convicted of doping. He is never mentioned as being a famous stutterers. How about criminals, serial murderers, and rapists.

- Most research in stuttering, especially those conducted by therapists, is a complete waste of time, and those low-quality researchers should be told about this rather than being congratulated for "the hard work they have done".

- Stuttering can be completely explained in scientific terms.

- Stuttering medication could well be helpful to people who stutter.

- Treatment for children is still not proven beyond doubt to be effective in the long-term.

- The majority of those who talk at conferences and claim that they cured themselves never actually stuttered severely.

- There is nothing physically wrong with *some* covert stutterers.

- The use of the word "holistic" is a reliable measure for poor quality in thinking.

- It is a good and necessary thing to take on crackpots and undertake every action possible to limit their ability to spread their message.

Taboo word No. 1: Cure, cure, cure, cure.

Tuesday, October 30, 2007

European Symposium on Fluency Disorders

There is a new conference coming up in Belgium in April 2008: the European Symposium on Fluency Disorders: see here for more information and a detailed program of speakers. The conference is organised by Kurt Eggers who works as a lecturer and clinician at the Lessius University College. I met him at the Oxford Dysfluency Conference in 2005, I think. He is currently doing a PhD on the role of temperament in stuttering and his PhD supervisor is Luc de Nil.

I will attend. It is only 2 and a half hours away from Luxembourg. The most interesting speakers for me are Luc de Nil with a summary of past brain research, and Nicole Ambrose on possible genetic factors for subtyping. Some talks are given via video conference link which is an interesting concept. I'll be curious how it works out!

Sunday, October 28, 2007

Crackpot award for Bodehamer

I have decided to continue my crackpot awards: see here, and here. But I am now going to include anyone who proclaims theories on stuttering that are completely ignoring well-established neuroscience facts on stuttering from the last 10 years. I mainly think here about structural and functional brain differences in young and adult people who stutter, and about genetics. Bob Bodehamer is a "good" example:
The cause: There could be several causes for blocking including genetic predispositions and/or developmental problems. However, our concern is not primarily about the first cause of blocking. Our concern is with what has continued the behavior. We believe that it is the meanings placed around those early experiences of struggling to speak that have become well learned which continues the behavior. This explains how most children grow out of stuttering while some don't - it is about the meanings that the child placed around the behavior.
This statement is just plain non-sense in the light of the most recent research. He permits that these first blocks could be triggered by genetics, and these blocks are enough to learn bad habits which results in long-term stuttering. So what happens to the genes afterwards? Are they self-destructing and not play a role anymore? Also, brain scans clearly show that the brain structure of adults and young people who stutter is different than fluent speakers. There is a physical manifestation. People who stutter do not have misplaced meaning, they have misplaced brain structures. In fact, what is happening is that the physical cause STAYS THERE even for children who recover, and provokes learned behaviours for those who don't.

He should stop playing the theoretician. Science is not theology, his day job as a Southern Baptist pastor. The empirical reality informs the theory, and not the other way around. I just hope he at least does not think that the Earth was created 7000 years ago. If he wants to contribute constructively, he should acknowledge that stuttering has a clear physical component. And no-one is disputing that the effects are also learned behaviour. And here is where he can use his NLP to minimize the effects, but I doubt it is any more effective than other treatments.

Saturday, October 27, 2007

Shameless advertising

This is just so bad and fits perfectly with what I alluded to in my tirade on media portrail of stuttering: see here.

I am wondering whether she is still using the device. Would be great to have her write a post on this! So if anyone knows her, let her know that I would love to hear from her.

Friday, October 26, 2007

Trial Start: DCM vs Lidcombe

Good news from Marie-Christen Franken! She has now received funding for a large-scale trial to compare the demands & capacities treatment to the Lidcombe treatment. And they have already enrolled children.

They have already published a pilot study: see here. Based on a relatively small sample and no long-term outcome measure (both are essential for a good trial!), they could not see a difference between both treatments:
This pilot study compared two treatments for stuttering in preschool-age children.Thirty children were randomly assigned to either a Lidcombe Program (LP) treatment or a Demands and Capacities Model (DCM) treatment. Stuttering frequencies and severity ratings were obtained immediately before and after treatment (12 weeks). The stuttering frequencies and severity ratings significantly decreased for both treatment groups. No differences between groups were found. Parents of children in both groups were cooperative in many respects, and there were no differences between them on scales that measured their satisfaction with the two treatments. The findings suggest that randomized controlled trials of LP versus DCM treatments are feasible, and they underline the need for experimental analyses of the two treatments. EDUCATIONAL OBJECTIVES: The reader will be able to: (1) describe the principles and methods of Lidcombe treatment for early stuttering; (2) delineate principles and methods of Demands and Capacities Model treatment; and (3) summarize results of an investigation that compared these programs' relative effects in a pilot study.

I am very curious what will come out. My guess is no big difference between both treatments. Though I am concerned that the statistics and research design like in the Lidcombe trial will be flawed. Another interesting twist would be to have a third non-treatment arm.

Tuesday, October 23, 2007

Meeting Marc Shell at Harvard

As you can see Marc Shell has changed a bit over the years. I guess this is what happens when you become a professor of comparative literature at Harvard University. Marc even has his own wikipedia entry, and of course he stutters. He recently wrote a book on stuttering, literature and his own experience called Stutter.
I met up with him on my East Coast stop-over from my California trip back to Europe. Boston was my first stop. The day started badly. I had arranged two meetings with two professors and they both canceled at the last minute, but then agreed to meet up upon my insistence. In the morning, I had a meeting with a professor at Harvard Business School who also wrote a book on venture capital, like myself. Mine is called Exposed to the J-curve. In the afternoon, I was supposed to meet up with Marc at 4:30. In the mean-time, I was sitting in a coffee shop at Harvard Square soaking in the atmosphere with free WiFi. And I played chess against the scrubby "chess master" outside in order to uncover him, but much to my surprise he was a true chess master with international rating and I lost all my games and money! I also have international rating and played in the World Junior Championship for Luxembourg but I am not at master level. Then I went to the English department, but Marc Shell didn't show up. I was just about to leave when the secretary run after me and called me back.

We had a good discussion on stuttering and on stuttering research. We especially talked about how more money could be channeled for stuttering research. Though I have to admit that at first it was a bit surreal to watch Marc Shell in action when the discussion turned from daily talk to intellectual. His words were chosen in such a way that my mind went blank. I mean I heard his words but didn't understand what he was saying. When science meets the arts... I noticed that his words are more loaded with specific meaning. So when I say functional I mean something that has a function, but he probably gives it a more specific meaning in the context of a given theory. He also comes up with many interesting subtle connections and ideas which make logical sense but are often not necessarily of relevance to explain the basic aspects of a phenomena.

Monday, October 22, 2007

Phase III Pagoclone trial delayed?

I know how interested every here is in stuttering medication, especially Pagoclone and its clinical trials. Some time ago, I posted a press release from Indevus about their intention to start a Phase III clinical trial in the first half of 2007: see here.

However, as of October 2007, I do not know of any evidence that the Phase III trials have already started, except the existence of waiting lists for the trial. (If you are currently part of such a trial, please let us know.) I can only speculate on this delay. First, any kind of project is often delayed by a few months for any reason. And therefore there is no reason to be concerned. Second, Indevus might have become more hesitant, and are having second thoughts. Such a re-evaluation might be in terms of efficacy, or in terms of a business decision. A re-evaluation also often happen irrespective of efficacy concerns after changes in management, the board of directors, or general strategy. For example, if Pagoclone only applies to a minority, the profit estimates might be severely affected. Such trials are very expensive, often in the tens of million dollars. On the other hand, an approved drug would have significant revenues. Indevus might also underestimate the potential market even as a "minority" drug, and therefore find the risks too high. One concern might also be their cash burn rate, i.e. they spend money without getting money back soon, and they might be looking for a partner like a venture capital fund or another pharmaceutical company to share the risks: see this intriguing conference call one year ago. As I said, I am only speculating by putting myself in their situation, based on public knowledge and based on my understanding of corporate thinking.

We will find out in the next months. However, should Indevus decide against a Phase III trial, which I hope they won't, do not expect a press release. Indevus has already stopped Pagoclone as an anti-anxiety drug and for premature ejaculation, I believe, and a third U-turn would reflect badly on them. A more likely scenario is that they postpone and delay release as long as possible, and the news appears somewhere in an annual report on page 130 in terms of a lack of provisions for Pagoclone. For example, the year-end 2007 balance sheet will be audited in March. So, the longer the trial is delayed, the higher the probability that they have indeed changed their mind.

On a side note, a detailed article on the Phase II clinical studies has not been presented at any conference or published in a peer-review journal, as far as I know. The only information comes from the Indevus press-release and conference calls to analysts: see here. However, at some point, such an academic discussion with a closer look at the data must happen.

Let's hope that this post is a storm in a teacup! Let me know when some of you are participating in a Phase III trial.

Sunday, October 21, 2007

Trying out medication: Week 4

Here is the four-week report on taking Zyprexa: see here and here for earlier reports:
Four weeks into the Zyprexa Zydis and so far, so good. The first week or so was very tiring indeed, my energy levels were sapped and I was very sedated. After about 10 days my energy levels resumed and I felt fine. My facial ticks/secondaries are all but gone, as I don't have to struggle so much to get the words out. In the past my stomach used to get into knots from forcing out the words, this has also stopped as the words seem to flow better. I no longer think about speech all the time, its a refreshing change after 30+ yrs as my mind seems clearer and I can focus more. I am less anxious in speaking situations. I am still a stammerer, don't think that this drug is a "magic cure" because its not, what it enables me to do is relax and seems to make the speech timing improve as I don't have the blocks anymore when initiating speech. Weight gain has been slight - I would say about 5-6lbs, however my weight fluctuates by 2-3lbs per week up and down anyway, and I can exercise off this weight gain without any worries. To sum up....."So far so good"........ My doctor said that when he saw me after 3 weeks, he could see an improvement in my speech and my eye contact. I will be having a blood test at 6 week and may well increase the dosage to 10mg as long as the sedation effect is not too much. I imagine that this treatment works better on some sub-types than others, and its working so far. I will let you know what the blood tests show in 2 weeks.

Friday, October 19, 2007

The second brain paper

The second article is now in press at NeuroImage. The main author is Soo-Eun Chang, a post-doc in Christy Ludlow's group at NIH (National Institute of Health) in Bethesda close to Washington DC. She is a speech and language pathologist by training. I had the pleasure to meet up with her and Christy for lunch on Wednesday before I took the plane back to Old Europe. Our discussion topics included their work and stuttering medication.

Here is their abstract of Brain anatomy differences in childhood stuttering by Soo-Eun Chang, Kirk I. Erickson, Nicoline G. Ambrose, Mark A. Hasegawa-Johnson, and Christy L. Ludlow:
Previous imaging studies in adults with persistent stuttering found left white matter deficiencies and reversed right-left asymmetries compared to fluent controls. We hypothesized that similar differences might be present indicating brain development differences in children at risk of stuttering. Optimized voxel-based morphometry compared gray matter volume (GMV) and diffusion tensor imaging measured fractional anisotropy (FA) in white matter tracts in 3 groups: children with persistent stuttering, children recovered from stuttering, and fluent peers. Both the persistent stuttering and recovered groups had reduced GMV from normal in speech-relevant regions: the left inferior frontal gyrus, and bilateral temporal regions. Reduced FA was found in the left white matter tracts underlying the motor regions for face and larynx in the persistent stuttering group. Contrary to previous findings in adults who stutter, no increases were found in the right hemisphere speech regions in stuttering or recovered children and no differences in right-left asymmetries. Instead, a risk for childhood stuttering was associated with deficiencies in left gray matter volume while reduced white matter integrity in the left hemisphere speech system was associated with persistent stuttering. Anatomical increases in right hemisphere structures previously found in adults who stutter may have resulted from a life-time of stuttering. These findings point to the importance of considering the role of neuroplasticity during development when studying persistent forms of developmental disorders in adults.

We'll find out whether Neanderthals stutter

Check out this interesting article: Neanderthals May Have Had Genes for Speech. The scientists have found FOXP2, a gene that in humans is known to relate to grammar/speech, in Neanderthal DNA. It is fascinating that we can now look at ancient DNA.

Once we have singled out the stuttering genes, we can also look at whether Neanderthals have these genes. Maybe they got extinct, because they were stuttering much more that modern humans!!!

Meeting the Inghams in Santa Barbara

The weekend before last I drove up North to Santa Barbara to meet up with the Inghams. They are both professors in speech science at UCLA at Santa Barbara and clearly among the leading scientists in stuttering research. They were so kind to invite me to stay at their place. They have a fantastic house in the hills of Santa Barbara. Roger Ingham showed me around in his BMW with the words "I like it much better than my Ferrari that I had before"... :-)

We had very good scientific discussions but also engaged in gossip. They were not too enthusiastic on medication to reduce stuttering due to lack of good evidence. I was questioning how this fits in with several reports (see previous blog posts) from people who stutter who took a medication and said they improved. The discrepancy might be due the existence of sub types. Or because the gains are not overt, but internal. I argued that stuttering is not just a malfunctioning of communication of the message from the person who stutteres to the listener, but that stuttering also affects the mental creation and therefore quality of the message. People who stutter either spent a lot of efforts avoiding or generating fluent speech or dealing with secondary symptoms and states of anxiety. This leaves them much less room to create good messages. I am so much better at creating messages when I stutter less and am not under time pressure. And, the medication might make this easier. Or, there were no improvements apart from placebo-enduced and due to weak methodology.

I also discussed with Roger Ingham his past, current and future research. He has a multi-million research grant and still works very closely with the brain researchers around Peter Fox in San Antonio (Texas). The Inghams go to Texas and stay there for longer periods of time, though they did not express great admiration for San Antonio's beauty. Regarding research, they are clearly moving in the direction of theory testing using methods like TMS (knocking out brain regions temporarily) to test causality, and dual tasks and fluency-enhancing setups to control the driving variables of stuttering better.

Thursday, October 18, 2007

Two breakthrough brain studies!

There is a new article out based on brain imaging work from two top neuroscientists Kate Watkins and Smith at Oxford on the brain of young people: see here and the abstract below:
Using functional and diffusion imaging, we examined brain structure and function in the motor and language areas in a group of young people who stutter. During speech production, irrespective of fluency or auditory feedback, the people who stuttered showed overactivity relative to controls in the anterior insula, cerebellum and midbrain bilaterally and underactivity in the ventral premotor, Rolandic opercular and sensorimotor cortex bilaterally and Heschl's gyrus on the left. These results are consistent with a recent meta-analysis of functional imaging studies in developmental stuttering. Two additional findings emerged from our study. First, we found overactivity in the midbrain, which was at the level of the substantia nigra and extended to the pedunculopontine nucleus, red nucleus and subthalamic nucleus. This overactivity is consistent with suggestions in previous studies of abnormal function of the basal ganglia or excessive dopamine in people who stutter. Second, we found underactivity of the cortical motor and premotor areas associated with articulation and speech production. Analysis of the diffusion data revealed that the integrity of the white matter underlying the underactive areas in ventral premotor cortex was reduced in people who stutter. The white matter tracts in this area via connections with posterior superior temporal and inferior parietal cortex provide a substrate for the integration of articulatory planning and sensory feedback, and via connections with primary motor cortex, a substrate for execution of articulatory movements. Our data support the conclusion that stuttering is a disorder related primarily to disruption in the cortical and subcortical neural systems supporting the selection, initiation and execution of motor sequences necessary for fluent speech production.
Another similar study will come out very soon. Studying and finding similar things. I'll talk about it as soon as it is published.

These two studies are especially significant as they studied young people's brains which should be less affected by years of stuttering. There is now very convincing evidence that brains of people who stutter are structurally different. WE HAVE DIFFERENT BRAINS!

Tuesday, October 16, 2007

Who says stuttering has no benefit?

There are not only costs to stuttering. Today, I drove down from Princeton to Washington DC on the 95 South. The speed limit is 65mph, which is infinitely slow for a European driver who is used to 90mph. So I was stretching the limits a bit, and much to my surprise a police car gets behind me and makes me tstop. Do you know what I did? I on purpose stuttered as much as I could. Where are you heading to? "Ehhhhh, WWWWWWWasshhh, WWWWaashhhh.." and so on. He was very confused and his face said "Why did I stop this freak?". I got off with a warning. Somehow he didn't want to spend too much time on me.. And who says stuttering has no benefits? :-)

Friday, October 12, 2007

Judy's Online Conference

Here is a link to Judy's online conference 2007. Many different people write articles on many different topics on stuttering: some interesting, some informative, some personal, some the same old stuff, and some misguided! Judge for yourself.

Meeting Jeff Blitz

The rocket scientist, that is myself, met up with Jeff Blitz, the director and writer of Rocket Science in Westwood on Sunday morning for breakfast. Luckily, Jeff also stutters so I had the opportunity to meet my first Hollywood director. He was not accompanied by blonde girls or bodyguards. I met Jeff at the opening of the research center at UCI Medical Center. So if you young, stutter and see no hope for a future career, don't worry: you can still become a Hollywood director, a quantum physicist, a UK pop star (Gareth Gates), a top sprinter (Ben Johnson), guitarist of Wet Wet Wet (Graeme Duffin), professor of comparative literature at Harvard (Marc Shell). I wonder if we also have a famous serial killer or mafia boss in our ranks. Did you make fun of my stuttering? Or if you don't want to be any of the above at least they will meet up with you as you stutter, too!

Jeff is the "older" person on the right with the main cast and the film producer. To be fair, Jeff looks younger in reality, but this is the only picture I could find of him. You definitely need to check out the movie website for previews. The main character is a teenage boy who stutters and joins the debating society. It is good to know that someone who stutters wrote the script and knows what it feels like to stutter. I haven't seen the movie yet, but I am convinced that it is one of the most faithful portrayal of stuttering so far. Jeff spoke about the challenge to present his movies in front of audiences during Q&A sessions. You should also check out his most famous movie, Spellbound, which received many awards including an Oscar nomination for best documentary. And this BBC interview.

Thursday, October 04, 2007

The Center for the Medical Treatment of Stuttering (CMTS)

I am currently in Orange County / LA, and I will attend tonight's opening ceremony of The Center For The Medical Treatment of Stuttering at UCI Medical Center, which is headed by Gerald Maguire who is a psychiatrist and the world leading (and only) clinician/researcher on stuttering medication. The center was made possible by a 1 million dollar endowment from Granville Kirkup. The focus of the center is on treating people who stutter using medication, on the research into stuttering medication, and on teaching. They will put out a press release to which I will link.

The center is a really great initiative to explore new avenues in the treatment and understanding of stuttering. The area of stuttering medication is still in its infancy, but shows promises at least for some patients. It's still early days, and some, especially from the traditional stuttering community, are quite skeptical and critical. However, it is also fair to say that most critics do not really know much about neuropharmacology and act out of instinct, and most importantly do not offer effective long-term treatments themselves. I get tens of emails from people who are looking for new avenues as traditional approaches have not helped them a lot. I am not saying stuttering medication is the answer for everyone or a cure for some. But we must explore new approaches.

Jerry has invited me to the opening, and I have been offering him free advice when needed on various issues from statistics, scientific methodology, fundraising to website design. But I'll keep an open mind, and I am not endorsing stuttering medication. I just do not know enough about them, and lack first-person experience. However, I fully endorse the idea that we must spend much more efforts on exploring this new avenue. In the same way, as we should with genetics and brain research into stuttering.

Monday, October 01, 2007

Trying out Medication: Week 1

Here is his experience after one week on Olazapine:

It's a week since I started on the Zyprexa Zydis and the Zantac (generic used). I have been tired, the first 4/5 days were very tiring, it seems better now, less tired. (the 'spaced out' feelings have gone). There has been no noticeably gain in weight, maybe a pound or so, but my weight can fluctuate by 1 or 2 pounds a day anyway.....I have not been able to exercise much this week as I have been so tired, however I am now over this and will exercise from now onwards. I will have a blood test in a couple of weeks to check my levels.

The facial ticks are all but eliminated, I am surprised that this happened so quickly. I feel less/hardly any stress in talking situations and indeed have intentionally put myself into more speaking situations as my confidence has grown. My stuttering has dropped considerably and I am only in week 1 of the treatment. There are hardly any blocks anymore and if it continues at this rate, I will be all but fluent soon - I'd never use the word "cured".

The fact that I am taking the drug may well have given me increased confidence and the upward spiral of confidence has occurred as opposed to the usual downward spiral that we usually experience, so it is self perpetuating. I liken the drugs to a pair of glasses for my eyesight, while I wear the glasses/take the zyprexa it will help my eyesight/speech, however if I take the glasses off/stop the treatment, the symptoms are still there.

Trying out medication: Week 0

I am starting a series on one of your fellow readers who is trying out whether medication is helping his stuttering. (I have edited the report and took out names.)

I am a 39 year old male that has always stuttered. I am married with 3 children, all of which are fluent. I have good and bad days, however over the years it seems to have got worse and I use a good deal of avoidance when entering speaking situations. I suffer mainly from blocks as opposed to repetitions and have major problems with introductions and my name (and other factual things I cannot change).

I have had conventional speech therapy as a young adult and in 2000 I did the McGuire programme. The costal breathing was great, it worked for a while and I was 100% fluent, well I say fluent, thats fluent to people on the outside, as I was thinking/living and indeed breathing stammering 24/7 365 days a year. After the Maguire programme, I got worse and worse as it was hard to go from "fluent" to worse than I was before the programme. I have tried hypotherapy and various CD/MP3's that offer a "cure" - If someone told me that I would be fluent by standing on one leg and chanting, I may have tried that too!!!

I have been doing a good deal of research and after consultation at the stuttering centre at UCI California I decided to take Zyprexa Zydis (olazapine) and Zantac to help offset the weight gain. Pagoclone is still on clinical trials and the drug will not be available until 2010/2011, so I will give the Zyprexa a chance. Prior to going on the drugs, I have intentionally dropped 10lbs in weight (I weigh 200lbs and am 6ft 2" tall) and embarked on a healthy exercise campaign to offset any weight issues that Zyprexa may cause. In addition I had blood tests to get a base line for my fats/lipids/bloodwork.

I took my first medication on Saturday and am now a 300 pound diabetic fluent person!!.....just kidding.....I will be monitoring my weight and will also bloodwork to see if anything changes. The first morning after the drugs, I was very tired, however this is to be expected at the start of taking the drug. As a result, I will make sure that I not be using threshing machinery/flying aeroplanes at 2.30am !!!

If the Zyprexa Zydis does not work or the side effects are too much, I would switch to Abilify which has less side effects but has not been so widely tested for stammering. I will keep a regular update on here so people can see the effects of the drug and also how it affects me in other ways.

Saturday, September 22, 2007


Sorry, I have been busy the last days preparing my US trip. I will visit LA, Orange county, Santa Barbara, San Diego, Boston, Storrs, Princeton, possibly NY on a day trip, and Bethesda near Washinton DC. Let me know if any of you wants to me up.

Re stuttering, I still want to reply to Greg's comments. I also was thinking that instability in speech systems (via genetics or neurological incident) might be a necessary condition but not sufficient condition to develop stuttering. For example, if you have fast-talker genes and you have an unstable speech system, you might develop chronic stuttering, because the system cannot handle the fast speech rate.

Friday, September 14, 2007

Stutter Talk Radio

You should check out this very American but well done and cool talk radio on stuttering: here. Just hit the PLAY button to listen to them:
Greg, Peter and Eric get together and talk about stuttering and life. We have fun, laugh, argue and agree, talk about the stuttering world, music, movies, and our wives and girlfriends. We try and make sense of the whole stuttering thing by talking about it. Tune in and join the conversation!
I hope they will invite me for a guest appearance, though I am a bit scared that I am not doing as well as they in controlling my dysfluencies. ;-)

Does Pagoclone fight the symptoms?

I found this interesting 1998 report on Pagoclone here:
Interneuron Pharmaceuticals, Inc. (NASDAQ: IPIC) today announced results of a Phase 2/3 trial showing that treatment with pagoclone, a novel GABA receptor modulator, statistically significantly reduced the frequency of panic attacks among patients suffering from panic disorder
Putting on the stuttering glasses, the stuttered speech is very often made worse due to the panic that kicks in at blocks. I often feel being out-of-control during my speech, unable to slow down, and then I have even more blocks. According to the study, Pagoclone reduces the frequency of panic attacks, and this effect might very well happen in people who stutter during their speech. They are less likely to get into a panic or the panic will be less severe, thereby giving the person more control of his or her speech, which in turn decreases the probability of blocks.

This would suggest that Pagoclone doesn't act and therfore doesnt tell us anything about stuttering itself (i.e. why do they have many more blocks than fluent speakers?), but reduces the panic secondary symptoms leading to more control and less stuttering.

Saturday, September 08, 2007

Stuttering on TV Mission Accomplished

The presentation of stuttering on TV is like the unfortunate Mission Accomplished banner of the Iraq war. The proclaimed victories over stuttering turn out to be just slightly more complicated. But you wouldnt have thought so watching TV shows on CNN, Oprah, or Jauch (a German talk-show). My message: Making a treatment decision based on these shows is foolish. And if you are a parent, plainly irresponsible. Unfortunately, that's exactly how most people choose their treatment. I have to confess that I am also drawn by such TV interviews, and my rational mind needs to fight the emotional manipulation which goes as follows.

a) Create an emotionally painful situation for the audience
- cutie shot of a child that stutters turning in desperation to a female who has this look of "I wish I could help you darling", or
- freak shot of a stutterer with severe symptoms, favourites are head movements, drooling, or 5-second silent (longer is no good as audience might switch to other channel).

b) Get the expert to rationally describe what has just happened. Therefore find an expert that has academic credentials that have vaguely something to do with stuttering, but is very telegenic. If not possible, just label the person "stuttering expert". Experts are often someone the TV crew know, like the sister of the friend of a colleague. If you have to chose between semi-expert but telegenic or "nerdy" real expert, always go for the telegenic person.

c) get the interviewer to engage with the sufferer and show compassion.

d) present a magic unexpected simple and fast solution to relieve the audience from this uncomfortable untenable situation, and explain in black and white. Humans absolutely adore fast, simple and obvious solutions, which obviously do not exist in reality.

e) show child or adult stutterer again but now speaking fluently, talking about how their life has changed. Not very difficult to achieve. Take the most successful patient from a stuttering treatment. Make sure the patients has just finished treatment so to benefit from carry-over fluency. If he still stutters a bit, let him talk for 10 minutes, and only take the 20 seconds where he is fluent! Children are best, because 80% recover anyway. So if you wait a few months, you have a fluent child.

f) now often the sales part kicks in. Where can I get this magic device? Where is this therapy offered? When is the medication available?

g) mention some disclaimer like long-term relapse possible, and my favourite is "talk to your doctor". These words are typically completely ignored as euphoria of the miracle still persists. But legally speaking, you cannot be not sued for your misleading sensational portrayal.

Consequence: The mothers, grandmothers or friends watch the interview, and tell you how stuttering can be cured. You say: But it's not that easy, but they insist and claim you are not doing anything and self-defeating. The fact that you are actually more of an expert than they are is conveniently ignored. After all, it's on TV and CNN and especially Oprah must know better.

Let me say it again: THESE PEOPLE HAVE NO CLUE AT ALL. They are journalists out there to sell a story, and they rely on the experts that they have choosen. I am not saying that some experts are no experts. I would guess 50% are real experts. But even if they actually make subtle statements with disclaimers, the recodings of say 20 minutes are cut down to 2-3 minutes and typically over-simplified.

So if you decide on a treatment, DONT RELY ON THE TV INTERVIEWS. Get in contact with a national stuttering association, and inform yourself. Not only do you make a more informed decision, you also have realistic expectations of your potential progress or that of your son/daughter.

Stuttering sign language

Greg Snyder wrote an interesting article The Existence of Stuttering in Sign Language and other Forms of Expressive Communication: Sufficient Cause for the Emergence of a New Stuttering Paradigm?: see here. Let me post a few extracts, especially as I am sharing some of his thoughts:
While reports of stuttering-like behaviors occurring in sign language have been available for almost 70 years, relatively little attention has been given to its existence and how the existence of stuttered sign may impact our understanding of the stuttering phenomenon. This manuscript provides a brief literature review of stuttered sign and offers a list of potential stuttered sign behaviors. Data is presented suggesting that stuttering is a phenomenon occurring in expressive communication, rather than speech and sign alone. Consequently, it is proposed that the prevailing theoretical constructs fail to account for stuttering in expressive modalities other than speech. It is suggested that the field of speech-language pathology reevaluate and possibly abandon the current pre-paradigmatic views concerning the nature of stuttering so that another perspective can emerge that better accounts for the stuttering phenomenon.
If the data presented in this manuscript does reflect reality, then we are forced to question the belief that stuttering is a speech disorder. On the contrary, the stuttering phenomenon appears to occur in a variety of expressive (communication) modalities. Further, if this suggestion is reality, then stuttering ceases to be a single (speech-related) pathology unto itself. Instead, it is suggested that the observable manifestations of stuttering behaviors are symptomatic responses relative to their corresponding expressive modality. These symptomatic behaviors may be in response to errors in the formulation, processing, and/or execution of expressive output, such as language; it is suggested that these symptomatic behaviors are natural compensatory responses at self correction from errors in processing or initiation at the central level.
In short, if the data and analysis presented in this manuscript do reflect reality, then the traditional views and definitions of stuttering as a speech disorder fail to account for the stuttering phenomenon. Consequently, researchers and clinical scientists may consider abandoning much of the prevailing paradigmatic (i.e., pre-paradigmatic) thought on stuttering, as it can no longer provide a truly scientific and falsifiable theoretical framework capable of accounting for the stuttering phenomenon. If stuttering behaviors are indeed symptomatic responses relative to errors in expressive output, including expressive communication, then a new paradigm will need to emerge to account for this new perceived reality.

Apart from his "making it sound more dramatic and complicated that it really is" style, I roughly agree with Greg, and see two necessary conditions needed for stuttering:
1) glitches in the speech system (leading to an temporary inability to initiate the appropriate speech motor sequence). However I do no agree that stuttering is not a speech disorder, because these glitches are not normal, and are due to defects in the speech system. Stuttering starts inside the brain.
2) compensatory efforts that develop and lead to overt stuttering behaviour and secondary symptoms. I agree that other glitches like in hand signing can lead to similar compensatory efforts, i.e. that these efforts are not specific to stuttering but a generic consequence to certain underperforming systems.

Friday, September 07, 2007

Other blogs on stuttering

Here are my competitors. :-)

I'm Stuck No More
Stuttering Blog
Smithy Strikes Back
Stuttering Student
Justin's Stuttering Blog
Asia Stuttering Assoc. Blog
Chasing The Fluency God
Pebbles Under The Tongue
Kids Speak Blog
FluencyCast Blog
Closet Stutter Blog
Stuttering-Help Blog (Bud)

Categorising drugs according to impact

Lets put drugs into categories according to their impact, drugs that:
- make stuttering worse for all.
- make stuttering better for all.
- make stuttering worse for some and better for others,
- make stuttering better for some and no impact for others,
- make stuttering worse for some and no impact for others,
- have no impact on stuttering.

I discussed the various systems that drugs could act on: here. It should be possible to systematically go through all drugs, classify them according to the above scheme, look in which brain regions / pathways these drugs are known to act, and then set up a list of the systems involved in stuttering. For example, if a drug has no impact then all the brain regions where this drug act should not be involved in stuttering, and so on. So similar to an fMRI or PET scan, such a study could build up a "drug brain scan" showing the regions of stuttering-relevant activity. Maybe this is practically not feasible, but theoretically it should work!

Thursday, September 06, 2007

An all-too-familiar story

I thought I would put this first-person report as a post, because he describes very well what many of us are going through:

I am a 29 year old severe chronic stutterer. After many years of ineffective sessions with various incompetent therapists, trying a couple of those expensive, ludicrous “miracle cure” devices, psychics, witch doctors, benzodiazepines and horrible anti-psychotic meds; I have grown rather hopeless and apathetic towards the idea of my affliction ever significantly improving and completely stopped keeping up with the latest developments and events in the stuttering community.
In a way, losing the hope actually helped me, by making me realize that I am just going to have to live with this condition and making me stop putting off my life until I’m “cured”. I decided to get out there and do the things I want, without worrying what others are going to think of the way I look (talking about the secondaries) and sound.
I now have a job that requires a decent amount of communication and no longer have avoidance issues when it comes to things such as ordering at restaurants, asking for help at a store, getting a drink at a bar, etc. I still have issues with meeting new people and phone conversations with strangers, but I am improving there as well.
Unfortunately, stuttering is still a major hindrance to my social life, especially when it comes to attracting females. It’s definitely wrecking my “game”, which is a major issue, since I would like to meet a nice young lady and start a family within the next few years.
Any way, recently I finally decided to get on the net and catch up on all the latest stuttering-related news and developments. This is how I discovered this very informative blog.
I also learned of Pagoclone and dug up as much info on it as I could find on the web. I am cautiously optimistic and even a little bit excited about it. The prospect of it improving my fluency by even 30% or so is very appealing, because it would make it a lot easier for me to control the secondaries and successfully implement fluency shaping techniques. Because of this, I recently submitted a trials volunteer form, but have not heard any thing back yet.
I am very curious to hear from the people who participated in the previous trials, for the obvious reasons, but also because I am wondering whether it would be a good idea to invest in some Indevus stock right about now. If Pagoclone does get the FDA go-ahead and goes into production, how big is it going to be? Is the market big enough for Indevus to make huge profit off of it? If it going to become the new Ritalin and be overzealously prescribed to every 4 year old who has a minor disfluency? What do you guys ?

Tuesday, September 04, 2007

TheStutteringBrain in California, Boston &DC

Jerry Maguire, professor at UCLA Irvine and chief investigator of the Pagoclone trials, has invited me to the opening of his research center on October 4th made possible by the generous donation from Granville Kirkup: see here.

So I will be in LA from October 2nd onwards for a week, and then to Boston and possibly DC. So if any of you are from these areas let me know and we can meet up. If you are a millionaire, you can also invite me to stay at your guest house and attend your high-society party. I hope for response from Beverly Hills. :-)

Sunday, September 02, 2007

Looking for Pagoclone trial survivors!

If you have participated in the Pagoclone Phase II study and continued its use during the open-label phase, please contact me under t o m DOT w e i d i g a t It would be interesting for me and the other readers to read about your personal experiences. You can make your comments anonymously.

Saturday, September 01, 2007

I am actually an actor

Stuttering is very strange for oneself and for others. I have this practical joke I play on non-stutterers and stutterers alike from time to time, along the following line. "Yes, we know you stutter". In a very slow and controlled manner, I look them in the eyes and say fluently "Mmmeee? Nnnoo. Actually I am an actor. I do not stutter, I am just preparing for this movie that I am going to audition in 3 weeks time. I play a person who stutters." Then they are caught off guard, smile nervously and expect me to stutter very soon. But I keep on talking, and talking, and talking fluently! They try everything to put me off-guard but I keep on being fluent... The longer I do it, the more amazed they (and myself, too!) are. And they all wait for me to relieve them "from this nightmare" with a stutter.

I had people starting to believe that I am a true actor! (which of course doesn't surprise me at all given my fantastic looks and charisma! :-) People that know me longer know it's a a bit of a joke, but they are still completely amazed that I have transformed from this "ehhm"- hectic- dysfluent speech person to a confident fluent actor voice... Sometimes they tell me that I stuttered 20 years ago. I am just telling them that I have been acting my whole life... it is boring to be fluent... i just get a kick out of others being embarrassed...

By the way, did I tell you that I do not really stutter. I am doing a PhD in sociology and analyse the impact of blogging on a special interest group...

Wednesday, August 29, 2007

Subscribe to the Stuttering Brain

You can subscribe to my blog using RSS. Here is what you need to do. This is for the FireFox web browser.
As you read this, look at the address area (htttp://...), and you notice the orange symbol at the end of the address area. Click on the symbol, and you get to a page that allows you to subscribe to the feeds, click "Subscribe Now", and a link bookmark is added to your bookmark bar. If you click it, you can see all the past posts, and you can choose which one you want to read. Once you read one post, the symbol will change next to that post. Good luck! :-)

Where could medication act?

I came up with various systems where a drug could act and improve fluency:

1) the gene expression on genes (partially) causing 2). A drug might inhibit the expression of some genes that make the speech system less stable.

2) the malfunctioning speech system itself. A drug might increase improve a malfunctioning system.

3) systems that decrease the effectiveness of 2) like emotions. A drug might shield the speech system from emotions and work overload, i.e. you can talk as if you are on your own.

4) the primary stuttering behaviour like blocks. A drug might ease blocks and thereby inhibit triggering other stuttering behaviour. You still stutter but softer and less loss of control.

5) the secondary behaviours like loosing eye contact, loosing control, tension, contortions, etc. A drug might inhibit the expression of bad habits or allow a greater control over them.

6) the tertiary behaviours like anxiety, fear, and avoidance. A drug might reduce these, and allow for a better quality of life.

7) the ability of stutterers to successfully implement a behavioural therapy like fluency shaping or dysfluency shaping (van Ripper) short-term and long-term. A drug might make you learn new behaviour faster and more lasting, in fact the drug might be mimicking the brain conditions of the few that are able to follow through and make lasting behavioural change.

Any more fields of attack? Let me know.

Tuesday, August 28, 2007

Mixing social and natural smile

Let me continue with the social and natural smile analogy: see last post. Often you can see a mixture or a transition between a social and a natural smile. Often, a social smile encourages a natural smile. A natural smile might turn into a social smile, if the joke ends badly. It is as if both systems access your face muscles to different degrees.

I experience similarly in my speech. When I am into the "social" speech like imitating a foreign accent, I am 100% fluent. However, it is not easy to switch immediately from "natural" speech to "social" speech, especially when I stuttered severely before. I need to shut up for 2-3 seconds, "clear my system", start very slowly, and then it usually works. Once I am into it, it's fine.

Interestingly, I just realised that the same is true when I am using a fluency shaping technique! So could we say that these techniques are "social" speech, and is therefore often felt articificial? However, when I am really into the "social" speech, I can somehow modulate it more and bring "myself" (whatever that may mean) more in. So I start with a social smile which goes into a semi or full natural smile...

Keep on smiling :-)

Monday, August 27, 2007

The social smile of stuttering

I spoke to a friend of mine who leads a neuroscience research group, and explained to his astonishment that people with PDS can speak fluently under certain circumstances while singing, imitating a foreign accent, chorus reading, and acting. I also told him about the theory that there are two pathways involved in speaking: one that lets us talk without thinking how we talk, and one that lets us conscuiously modulate our speech. And he mentioned the social vs natural smile phenomena.

People can naturally smile, where they do not control how they move their face muscles, and give a social smile where they decide to smile (even if the joke was bad or they hate their opposite!). A social smile has evolutionary advantages because you can mask your own intentions for the greater good. So let me apply this analogy to stuttering.

When we make a "social" speech, we control how we want to come across. When we make a "natural" speech, we just talk and dont care or are aware of how we speak, it's done automatically. And, in people with PDS, the ability of "natural" speech is sensitive to all sorts of interferences!