Brenda Carey changed her website!

A reader made me aware of irresponsible marketing by Dr Brenda Carey. She has now changed her marketing strategy from a misleading "Stop Stuttering with ..." to a reasonable and factual "Stuttering Specialist Dr Brenda Carey": check out the website. She and her team are definitely stuttering specialists. I might not agree with everything they do, but, if you lived next door to their practise, I would not hesitate to suggest that you take your child to them.

Interestingly, she changed the text from "..what options are available to stop stuttering" to "what evidence based treatments are available to reduce your stuttering and improve your communication." I would have added "reduce your fears" or "improve your well-being".

Antwerp Stuttering Conference

Check out the announcement for the Antwerp stuttering conference in March 2012. I attended last time. My two memories are that I was utterly bored by two key speakers (one of them talking about how to set up a questionnaire!), and on getting nearly sick on eating mussels! I hope they will change the format a bit and have more panel discussions. Debates not monologues!

But overall, a cheap conference worthwhile attending, even if it's only for networking.

Will she change her website?

Check out Ora's question relating to my post on the unethical marketing of stuttering therapy. He got a reply from Brenda Carey:

Ora, I do thank you for your helpful comments. I certainly did not intend to mislead, and will be changing the wording of my site and its address promptly (as soon as I have the tech support). Regards, Brenda Carey

As in politics, watch their actions and not their words. Let's wait and monitor the site. But as she writes, she needs to find another web address.

Thanks to the reader who made me aware of the website, and all others who supported my post and put ethical standards above sensitivities of a paid professional!

Stop Dr Brenda Carey

[The situation has changed after writing this post, and Brenda Carey has changed her website. Please see here.]

A reader has pointed me to this rather outrageously marketed website Stop Stuttering by Dr Brenda Carey. A highly irresponsible marketing strategy if you ask me: to suggest that you stop (a marketing place holder for cure?) stuttering with her, even for kids. The sentence "Stop Stuttering with Dr Carey" reads in parents and pws's mind as "Dr Carey can make you stop stuttering".She falls below the ethical standards that I would expect of a therapist.

Judy Kuster's International Stuttering Awareness Day (ISAD) Conference is open until October 22nd, 2011. It's the 14th conference that she has organized and there are always some interesting articles: people who stutter and clinicians sharing their experience. Usually, I get an email asking to publicize the event, but not this year maybe my blog has ceased to be important...

Check out Drayna's summary of genetics results. I plan to ask a few questions.

You can leave questions for the panel of experts in Office Hours.

Have a look at the conference. She does a great job to get people to write and debate. And you get a feeling of how the Internet web pages looked fifteen years ago! ;-)

Do specialists get better outcome than generalist clinicians?

I had an idea for some useful piece of research, which would be a change to the research time wasted on useless research.

The treatment of non-specialist SLTs always struck me as scandalous from my own experience and that of others. These are people who have visited university for four years with one course at best on stuttering by an expert, but more typically a few lectures giving by a semi-crackpot prof on what causes stuttering. Then, due to the dictatorship of academic degrees and professional qualification, society gives them the monopoly to treat people who stutter even though they have no clue whatsoever. The clever ones openly admit to their cluelessness on the matter and refuse to treat. Thank you for your professionalism and putting ethics before money! Even though you are probably the non-specialist who would best treat people who stutter! The others are the "I am a qualified SLT and I know what to do." Run, run fast!

Well that is theory! But is correct? What I want to see is the following outcome study. Take 100 people who stutter, assign them to expert SLTs and generalist SLTs, and let's see what's happening. Will the experts get better results???

Parry's Valsalva theory and treatment

A reader has asked me about my opinion about the Valsalva theory and treatment created by William Parry. Check out Parry's website. As two year ago, I have not made up my mind.

At best, his theory is a partial theory of stuttering and only focuses on the stuttering and blocking events. For Parry, the mis-use of the natural Valsava mechanism greatly blows up the symptoms of our inefficient speech system. Relaxation of the muscles involved in a Valsava mechanism helps reducing the tension and severity of symptoms. It seems to me that his method is similar to muscle relaxation techniques.

I have added a diagram that I found on his page that illustrates his theory. Have a look at it! Let me know of your opinion.

Self-help in Sarajevo

On Tuesday evening, we met up with Alan who is leading the effort of setting up a stuttering organisation in Bosnia. He met us at our hotel and we drove into the surrounding hills to a restaurant with a superb view over Sarajevo. He showed us pictures of his sponsored trip to attend the ISA conference in Argentina.  Without any prompting on my part, he also had a picture of the ISA board meeting, and pointed to Thomas Krall, the German representative at ISA. According to Alan, Thomas was behaving out of place and

Stuttering in Serbia, Montenegro, and Bosnia

I am currently on a beach holiday with Jelena. On our way down from Belgrade, we met and stayed at Tiana's parents' place. She is a high school student, and lives in Prijepolje in South-West Serbia, close to the border with Montenegro. And her brother is a great fan of strawberry ice cream!

Yesterday, we met up with Gordana (see picture). She is a student in English and French and comes from Budva on the Montenegrian Coast, not far from famous Sveti Stefan. We spoke about her recent therapy experience and she also taught us some new Salsa moves! And today, we are heading to Sarajevo to meet up with Alan and the local self-help group. Should be fun! I'll post group pictures....

Two must-read up-to-date summaries

Here are two articles with an up-to-date summary of research findings in brain imaging and genetics.

Soo-Eun Chang wrote the first review Using Brain Imaging to Unravel the Mysteries of Stuttering. She has been spending a lot of years brain imaging at the NIH under Christy Ludlow, and has now moved for more independent research. I met her and Christy at NIH a few years ago. She is modest and diligent. Expect her review to be the same: measured and well-researched.

Drayna and Kang have a review on genetics research Genetic approaches to understanding the causes of stuttering (though expect that they talk a lot about their research) with the following abstract:

Stuttering is a common but poorly understood speech disorder. Evidence accumulated over

Wanne be a reviewer for my book?

If you are interested in reviewing my book, please send me an email. The book is about a new biopsychosocial model that allows modelling all drivers of human processes. You can find more information on this website. I also have a section on stuttering.

Auditory-motor integration in different part of brain?

Martin Sommer's team has published new results on their TMS experiments. Martin's student Nicole Neef presented results at the Oxford Dysfluency Conference three years ago on that same topic.The big issue with TMS is that you need to aim correctly to ensure that you "magnetically" knock out the targeted regions. I am somewhat puzzled what more they found. I would have to dig out the paper to see what has now changed to warrent an Elsevier press release. They claim that they have found further evidence that auditory-motor integration is located in a different part of the brain, because TMS has the reverse effect on people who stutter. Such a profound re-organisation is probably the effect of some neurobiological abnormality arising in early childhood.

As a footnote, you might notice that Alexander Wolff von Gudenberg is an author of the article. He is the boss of the Kassel Stuttering Therapy, and I introduced Martin to him with the aim to give Martin plenty of experimental subjects for his experiments. They regularly put clients into a bus and drive them up to Goettingen with their will [as opposed to "against their will"]. So delivering brains for research gives you co-authorship!

Because of stuttering?

I know that TheStutteringBrain has been quite silent. I am currently working on my upcoming book intensively, and just didn't come around writing posts. Recently, I came across this statement:

Some stereotypes are self-reinforcing. If someone tells you over and over that you are oppressed, if you hit an obstacle and fail, like all of us do at some point in our lives, a convenient excuse is that you are discriminated against

I also noticed that we are often using stuttering as an excuse for failure: I didn't get the job, girl, recognition, the promotion, the attention, the qualification BECAUSE of stuttering. But everytime I probe us, I discover that stuttering was not the cause of our failure or at least not the only one and definitely not an insurmountable one. No, we either did not have the qualification, the charm and looks, the charisma, the ability for hard and dilligent work to succeed.

Here is a story from my life. I blamed the fact that I didn't have a girlfriend on my stuttering. Then I went to a youth camp for stuttering young people organized by ELSA (European League of Stuttering Associations), and thought that now I will get a girlfriend! When that didn't work, I started thinking that maybe it was not just due to my stuttering! ;-)

So the next time you fail. don't blame it on stuttering.

New trial for Pagaclone participants?

A reader informed me that

I’ve been advised that Endo is going to launch a new Pagoclone study involving people who have already participated in the trial.  Interested participants (again, it’s only for those people who have already participated in a Pagoclone trial) should contact Dr. Angelo Sambunaris ...

If the rumour turns out to be true, several questions will arise: Does Endo want to test whether a subgroup benefits from Pagoclone or whether it's just a fata morgana? Who is Dr Sambunaris? What ever happened with Jerry Maguire as chief investigator? Is that the reason he doesn't mention Pagoclone any more? What ever happened with the trial data? Will it be published or not? 

I am President of Greenhearts Toastmasters Club

I spoke about Toastmasters many times before, and what a great learning environment to face up to your speaking fears and develop public speaking skills. Ideal for the transfer and maintenance phase of an intensive therapy.

I am now President of Greenhearts Luxembourg Toastmasters Club. At first, I declined because I felt it was too much work. ;-) But then I realized that I should do what I fear, am uncomfortable with, or do not have experience of. Being the president of a club of 50 people is definitely a useful experience. On the organisational, behind-the-scenes, and running the committee side, I don't see much problems (so far). Also because my fellow committee members are all reasonable people. ;-) But I am not really a natural presenter when it comes to thanking everyone, being nice to everyone, only mentioning the good side, and so on. I need to talk at each meeting, and report on our activities. That's slightly different to preparing a speech and knowing it by heart.

So I challenge you to join Toastmasters or go into a new experience! What doesn't kill you makes you tough!

Great StutterTalk interview with a mother who did Lidcombe

Great interview by Peter from StutterTalk on a mother's experience with Lidcombe. And how she got promised the gold standard, and she was told how all experts agree. Again the same fallacy. Lidcombe works perfectly, so if it doesn't work, the parents are to be blamed or the treatment has not been done correctly.

Listen from 28:00 onwards for a very powerful report of the mother...

Even though it's a good interview. It's still frustrating to see how the mother struggles to understand the phenomena and commits fallacies, but also Peter's replies and statements on the evidence base on Lidcombe is not exactly correct. But mind you even what Nan Ratner said on StutterTalk was not exactly correct. This is just the trouble of the whole field, the debates are filled with not exactly correct statements.

Outcome trial on Phonation Intervals Program

I want to share with you this information on a big outcome trial founded by the NIH. Roger Ingham told me about the trial several years ago when I visited him in Santa Barbara. The program runs from 2006 to 2012. I don't know much about the Phonation Intervals treatment. He explained it to me, but I forgot. I think it's based on the idea that speech initiation is the core issues and phonation is trained, similar to fluency shaping?

The context for this study is an exhaustive empirical examination of a research-based and computer-managed treatment for adult developmental stuttering known as the Modifying Phonation Intervals (MPI) program. Within that context, the studies described in this proposal will test a number of hypotheses concerning the relationships among several critical factors: stuttering behavior, the neurology of stuttering, the cognitive and affective components of stuttering, stuttering treatment approaches, and the maintenance of stuttering treatment gains. Thus, this proposal simultaneously addresses two overwhelming needs: efficacious stuttering treatments for adults, and the integration of

Mindfulness in stuttering?

Boyle wrote an article on the potential use of mindfulness in the treatment of stuttering. The abstract is well written and the article looks worth reading. I myself have tried out mindfulness but not on a long term basis. The idea is simple: you just sit silently and direct all your attention to a single source of attention: be it breathing, eating a grape, your inner self, or focusing on a visual stimulus. Even five minutes give you a sense of peace. But of course no cure at all for stuttering, but rather gives you the ability to take a step back from daily life, reduce your stress levels, and reflect on your condition. I see mindfulness as a non-pharmaceutical treatment to decrease anxiety and stress in order to start working on stuttering or the psychosocial maladaptations.

Some readers always imply that I am against qualitative research or discussions. That is not the case. However, I do take the view that you either write qualitatively about techniques or experiences, OR you write a serious scientific articles. The mixture of both is usually a disaster.

Here is the abstract:

The use of mindfulness training for increasing psychological well-being in a variety of clinical and nonclinical populations has exploded over the last decade. In the area of stuttering, it has been widely recognized that effective long-term management often necessitates treatment of cognitive and affective dimensions of the disorder in addition to behavioral components. Yet, mindfulness based strategies and their possible usefulness in stuttering management have not been described in detail in the literature. This article seeks to engage professionals who treat stuttering in a conversation about the possible usefulness of incorporating mindfulness training into stuttering management. A review of the literature reveals that there is a substantial overlap between what is required for effective stuttering management and the benefits provided by mindfulness practices. Mindfulness practice results in decreased avoidance, increased emotional regulation, and acceptance in addition to improved sensory-perceptual processing and attentional regulation skills. These skills are important for successful long-term stuttering management on both psychosocial and sensory-motor levels.

Ready to help researchers?

Researchers are always looking for experimental subjects: a resource and time intensive part of being a researcher. In February, I posted a call for volunteers from Deryk Beal: see here. His call is still active, so please if you can get to Boston and you stutter, let him know! Sending me your calls for volunteers or other causes makes sense as TheStutteringBrain reaches out to many worldwide:

Hi Tom

Thank you for posting our call for research subjects on your blog. As a result of your post at least 3 different people who stutter contacted to participate. It may not sound like much, but that is a large number of people considering that your post is free and originates in Luxembourg! One of those people was able to go on to complete both an experiment at MIT and later one at BU. Unfortunately the other two were not able to participate.

We are still actively seeking participants. We have currently recruited 11 PWS who have completed the study, over a 8 month period, but we need approximately 10 more PWS

Deryk.

Hitten loves us!

I like Hitten's Stuttering Hub. His posts are short, his comments are (mostly) wise and not just empty talk, and he doesn't make the mistake of launching into causal theories of stuttering but focusses on the reaction to (his) stuttering. I recommend his blog to anyone who wants to address the psychosocial aspects of stuttering: the fears, the sense of underachievement, frustration, self-esteem issues, and negative attitude. He also offers free counselling sessions.

If you want to know why Hitten loves us, read his post on attending a 10-day meditation course.