Thursday, February 26, 2009

Stuttering should not stop you trying

I often get emails from readers asking for advice, and asking whether they are able to do X Y. The rule is very simple: Just try it out. Here is another one (I have made it anonymous, but decided to publish so others are inspired), and please let my reader know what your thoughts are. And I am pretty confident that at least here you agree with my comments!!
> Hi, I've got an admission as a PhD student, but because of my stuttering problem, I don't know whether I can be successful or not.
First congratulations. Second, complete non-sense! I know many who did PhDs and are still stuttering. Actually, it is easier doing a PhD because you do research and write your thesis which does not require you talking. So what is the alternative to not doing a PhD? WHATEVER you do in life you have to face stuttering? So you might as well do the stuff you want to do!!
> I've really been hoping to become a competent scientist for whole my life.
Great. that is the single most important factor to become a good research student.
> I'm sure that you can give me very essential advice to me because you've overcome your stuttering problem and got a PhD. When I found your blog, I think you are a role model to me.
No, I have not overcome it. But I had to make a similar decision, and went to England to study and later get a PhD. I always told myself: Tom you will do it what ever happens. Stuttering will NOT HOLD ME BACK FROM TRYING! And very importantly: I WILL ALWAYS TRY AND GIVE ME BEST: IF I SUCCEED; GREAT: IF I FAIL, AT LEAST I TRIED! Do you want to spend the rest of your life regretting not having tried it?
> I think that fluency was essentially required for you to get your PhD degree.
Actually, I know few stuff where you do not need to speak a lot. In fact, speaking while doing a PhD is a tiny part of your work.
> Maybe you had to give a presentation fluently, or you might take an oral test to pass the qualified exam.
No, I have stuttered during presentation, but EVERYONE was very helpful. Instead it was easier in a sense, because they were understanding because of our handicap.
> And I think fluent speaking ability is really needed for you to do a job as a consultant well. How have you been dealing with all those situations in which you need to speak well and fluently?
As a consultant, fluency is more important. But you just need to keep moving and say: OK, maybe I am not fluent, but do you want to have a fluent clueless semi-expert or a stuttering expert? Stop thinking about it. Think about how to cross that bridge when you get there not now! You haven't even started your PhD...
> Moreover, whenever I try to speak in English, I can feel that my mouth is more frequently blocked. I guess that you've got through a similar problem. Would you mind if I ask you about how to deal with the problem too?
I just did it. I just took the challenge.
>>> Or I think anything you say to me can be helpful for me. If you have anything to say to me, just let me know about them.
As I said, just do it and don't care about what will happen. Whatever you do, you have to go through it. Re treatments, you could join a local self-help group and attend a national stuttering conference to meet others. It is a great source of inspiration. And I would recommend that you send an email to your news supervisor or admission tutor, and explain him that you stutter and ask whether this will be a problem (and also tell me that you really really want to do this...). I am sure s/he will write back that they will do everything to help you. So be open about it, it will help you decrease the pressure because it is talked about and you will see that everyone (99%) will try to help you as much as possible. Good Luck! Tom

Wednesday, February 25, 2009

The field needs anonymous comments

Greg has questionned anonymous commenting on my blog. I say that the field of stuttering desperatedly needs anonymous commenting. Some angry minds are abusing this, but the benefits overweight the downside. If my blog were a physics or math blog, there would be no need to do so because debate and putting forward good counter arguments adds prestige and rarely damages your career.

I have often encountered reluctancy from clinicians and scientists to speak up and criticize other people's work. The comment section provides opportunity to do so in the safe way.

I agree that some people are attacking too harshly, and attacks on the person itself it not really acceptable. Maybe I should delete more comments like this that add no arguments per se. Of course, this involves more time spent on reviewing comments.... On the other hand, it is good to know what some people think even if it is bad, so we get a better representation of reality.

Some of you might have noticed that I had the comments moderated for some time. Someone wrote nasty comments about me, which were completely unacceptable and did not add to the topics in any way. But after sending 10s of comments over several weeks, he finally stopped wasting his time and I de-moderated the comments section again.

Tuesday, February 24, 2009

Responding to a reader's comment

From time to time, I have to respond to comments on my posts. And here is one of them:
From first hand knowledge I know that 1) the information that Dr. Drayna shares with us is not 2 - 3 years old. He is sharing current information, he just won't be telling us the full details of story (i.e. they have found some variants, but won't tell us what gene(s) they are in). True it can take a bit of time to conduct research and analyze data, and there are journals that have a very long lag time from when an article is accepted until when it comes out in print. I know that for the most part it takes on the order of a couple of months to get an article published (often depending on the quality of work and any additional work reviewers want to see).
I am just saying that this is what you can expect when you attend the conference. As a member of the audience, you will not really hear the latest stuff. It is not a criticism of Drayna as such but a reality of scientific research except in physics and mathematics where it is all open access before publication and you can have completely open intellectual debates.  In my experience, it is 2-3 years before we hear all the details, and only with all details can you really debate and challenge people. This is especially true in brain imaging which hampers debates a lot. Even reading my blog is sometimes talking to me in the past, because I often know of results before publications, but promised the researchers not to write anything before it is made public.

Second, Larry Molt has some interesting data regarding long term efficacy of SpeechEasy. There are many reasons why it takes time to publish research. Very often they (scientists, not just Molt) get interns to do some of the data coding and/or number crunching. It does happen that sometimes they make mistakes and those mistakes need to be fixed. His long term study that has taken several years and is still not published, actually does not give the SpeechEasy the best representation. (He presented his findings at ASHA Nov. 2008) One of the issues may also be the number of participants that dropped out over the course of 4 years. Participants do this for a number of reasons that do not reflect on the quality of the research.
Here is what I contest and it is up to Larry Molt to address these issues
  • I sent him an email asking him about the latest status. He never replied.
  • He has received money and so it is his responsibility to do efficient research and MAKE IT AS PUBLIC AS HE CAN.
  • He is responsible for making sure that Speech Easy quotes him accurately on their website and includes his latest results. This has evidently not happened, which misleads potential customers.
  • I do not buy the interns-making-mistakes. He is the supervisor and holds responsibility. Especially, because this is so high profile and high stakes research.
  • If participants drop out, it is very often because they are not satisfied and should be treated as a failure unless clear evidence points to the contrary. And I have never said that this is an issue for me.
  • How come all the other studies started after him but finished before him?
  • I was not at ASHA. But if he did present findinds, then why are they not made public in a press release? They did one when he got funding!!!! And why is it not on his website?? And why does Speech Easy not have his latest on their website? He should force them to do that or they should not mention his name.
Are you saying I am not allowed to ask these questions? No-one else is asking them. And a final comment. I do not care about why troubles occur. I only care about the results.
Lastly, the manufacturer of SpeechEasy (Janus) recognizes that there has been a lot of heavily biased and hotly contented research published on the device. Janus now has a scientific research board that is beginning to fund better quality research to develop a better device. They seem to be doing their part to make the SpeechEasy better and also to produce more and better unbiased research of the device.
Wow. Don't you see what is going on. So first they make a big announcement about trying to support research into the product, big press release, put it on the website, and wait. This gives them about 4 years breathing space to sell as much as possible. Then when the slowl researcher finally comes up with results that are not too good, you do not put them on the website, and make no big noise. And you completely ignore the other studies that came out faster. So now they feel the pressure and say: We recognize that this is a hotly debated area, so lets create science board and develop better research. Again they save years in which they can make millions of dollars again. Wow, so now they seem to agree with me that the research they funded was not very good. Sounds awfully like the Neocons. If it doesnt fit my ideology, it is wrong and I need to do better research. Sounds awfully like the Iraq dossier. We now know: no weapons of mass destruction, even if there were, there never ever was a risk for US or Europe, millions displaced or died. But we all heard the years of denials.

And here is a message to the person(s) who have been hired by the Speech Easy maker for marketing. I know that you understand what I am writing but you keep on doing it because you earn money. Do you really want to do this? Do you not feel a moral responsibility?
I think there are some good things that you mention in your blog Tom, but from someone who has spent a number of years pursuing an education and career based on the etiology and treatment of stuttering, I feel like you consistently miss the mark in a number of places, and it frustrates me. I keep trying to like your blog. I really want to. I really want to give you the benefit of the doubt. I keep wanting to not disagree with at least one thing in every post I've read. But I can't. I apologize. I really don't like to be critical in this way, but I couldn't sleep...
Why don't you want to be critical? What is wrong with all of you? It is a debate, it is not a bonding and networking session. You suffer from consensus-obsessive-disorder whose tentacles often confuse the functioning of our brains. If you disagree, then just write a comment. No need to apologize. I am not writing my blog because I want to become popular. I write it because I want to put out arguments and challenge opinions that are not well argued.

I often see this attitude: Oh Tom has a PhD in physics but I work in the field. He tries hard but he just doesn't get it. Have you ever thought that you might not have gotten it? Several times, people have come to me and say: Tom your blog is interesting but you often miss the mark. And I start a debate and ask them so what exactly do you not agree with. And in every single case, they end up with saying something like "fair enough", because they realise that it was them you did not consider all aspects and realise that my argument is valid. I do admit that I do make factual mistakes sometimes, or put things more black and white than they are but I do this in order to have clear arguments.

Monday, February 23, 2009

Is TheStutteringBrain or StutterTalk not reputable?

If you are interested in research and a member of the National Stuttering Association (you don't even have to be a member, I guess), they have an interesting research symposium at their annual meeting in July: see the details.

 NSA’s Research Symposium for our Membership, Thursday, July 9, 2009 (10:00am – 12:30), Westin Kierland Resort & Spa, Scottsdale, Arizona.  The NSA is excited to announce that in response to our members’ request for more information regarding research about stuttering, we have expanded our annual conference to include an annual NSA Research Symposium, at no additional cost to our members. The focus of this session will be to get scientific information on the treatment of stuttering directly to our membership, not from the internet or other less reputable sources.

I sincerely hope that the NSA is not implying that all information on the Internet, especially blogs and podcasts, are not reputable. I beg to differ, and NSA should remove this sentence. StutterTalk and Judy Kuster for example do a very good job. In fact, we are more reputable in the sense that we have far far fewer conflict of interests as you will soon see.

To show how we add value. Here are a few issues you should be aware of, and you might even want to ask them questions about in case you attend.

1) Do not let yourself be blinded by someone writing that they have invited one of the nation's leading experts. Who decides who is the leading expert and who decides who is an expert? If we were to name those clinicians as experts who have a high sucess rate in turning us into fluent people, the number of experts would be very low indeed. In fact, the McGuire program is probably not less effective, but no-one would call the instructors as experts, right? Why not? You need to be especially carefull with clinicians. It is difficult to judge the quality of research, and good networking, presentational, political and lobbying skills carry you a very long way.

2) Denis Drayna is in my view the leading geneticist in stuttering (and as far as I know the only full-time geneticist working on the topic with a research team) and the only real professional scientist on the panel. But he has little to say about treatment of stuttering and I am sure he would admit this readily. I tend to believe that he is on purpose not trying to delve too deep, because he works within the paradigm: give me a disorder, I run the genetics algorithm, and lets see what genetics tells me. In fact, the only thing he would say is that genetics will not help us at all in treating stuttering. Or, he starts spinning (I guess on his research grant applications!), and you might hear him say that one day we have the possibility of gene therapy, and if we know which genes are responsible we know what causes stuttering. Maybe in 20 years. You also need to be aware that he is not telling you all he knows. His goal is most likely (and so would mine be if I were him) to find the stuttering genes, and get famous with a Science or Nature article. So he cannot talk about new research before the article is public, and that often takes many months if not years. So when he talks to you, it's like stepping into a time machine and talking to him 2-3 years ago. But you can catch the occasional glimpse into his mind on my blog: see this piece of news made public by Greg who Denis Drayna had to inform by law. So if you attend the talk, it's the news from 2-3 years ago!

3) Jerry Maguire is the most active and influental player in pharmaceutical treatments, but note that his biography includes "As a matter of disclosure, Dr. Maguire receives research grants, consulting fees and/or honoraria paid to his university from Indevus, Teva, Eli Lilly and Bristol-Myers Squibb." Moreover, his biggest source of income is his practice where he and a colleague prescribes medication for treating stuttering and relating conditions receiving patients from all over the US, and from telemedecine consultancy where he has patients via the net but the medication is prescribed by local doctors registered in that state. He is also heavily involved in the Pagoclone trials. So he has a unique experience, but there are plenty of conflict of interests. Because of all his involvements, he cannot be seen as an independent reviewer of the field. Like Drayna, talking to Jerry is also a bit like stepping into a time machine, because again he cannot divulge the current state of research. And, it is also worth mentioning that he is a medical doctor and lecturer first, and a researcher second. [see a clarification by Jerry Maguire below]

4) Walt Manning. I was sitting next to him at a dinner, but I cannot really say much about him. He seems mostly to be a clinician who also does research.

5) Larry Molt. I am not sure what to think: He has given SpeechEasy a cover for their close-to-fraudulent marketing campaign, unintentionatilly or not. He holds a heavy responsibility, because he has accepted money from the SpeechEasy company and after 4 years has not published any outcome study (as far as I know). In fact, I can only find one unrelated paper where he is a co-author. Moreover, he has not forced Janus Development to update their outcome studies on their website. He has also not replied to an email I sent him some time ago, for more information. So if you are at the meeting, you need to ask him these questions: Why not published article? Is he happy with SpeechEasy mentioning him on the website without final outcome results? How much money did they give his research group? Has he any other connection with them? Does he agree that they use his name as a cover for very weak outcome literature?

6) Vivian Sisskin. I never met her before, and never heard of any research findings.

[from Jerry Maguire: For clarification for your blog, Tom. The industry payments from Teva and Indevus for our stuttering work are given directly to my University and are used to support our stuttering clinical and research programs. Also, the majority of my income comes from my role as the Senior Associate Dean of the medical school where Ioversee the educational program for our school. I receive relatively little income from clinical revenue for our stuttering program. My salary is supplemented by my endowed chair received through a philanthropic gift which supports my time to conduct our stuttering program. A significant percentage of our patients seen via tele medicine and in person do not pay for their visits. Those with the ability to pay or who have health insurance do receive billings, but for individuals without such coverage, we provide care at no cost. The support from Eli Lilly and Bristol Myers Squibb is also given to my University for my work in schizophrenia research and education and after percentages are removed to support our school, the remaining funds to go toward my salary. I was the one who voluntarily listed these as potential conflicts in a matter of disclosure so the stuttering community is aware.]

Thursday, February 19, 2009

Normal interplay between both hemispheres

Martin Sommer has a new brain article out. He is well-known for the discovery of fibre deficiencies in the left hemisphere which was later confirmed more or less by others like Watkins and Soo-Eung. I met him several times in Goettingen where he lives and works, and at conferences. Our first meeting was in my car (it was raining, I remember) and then in a local car repair shop, because I unwisely put the wrong fuel into my car! He also stutters, and runs a self-help group. He works as a neurologist and does research. And don't mention trains, because he is a fanatic of!
I do not have access to the full paper yet, but it looks as if he could not find any evidence for abnormal interplay between the two hemispheres. I write more when I know more.

1: Mov Disord. 2009 Feb 17.

Normal interhemispheric inhibition in persistent developmental stuttering.

Department of Clinical Neurophysiology, University of Göttingen, Göttingen, Germany.
Imaging studies suggest a right hemispheric (pre)motor overactivity in patients with persistent developmental stuttering (PDS). The interhemispheric inhibition (IHI) studied with transcranial magnetic stimulation is an established measure of the interplay between right and left motor areas. We assessed IHI in 15 young male adults with PDS and 15 age-matched fluent-speaking subjects. We additionally studied the ipsilateral silent period (iSP) duration. We found no significant between-group difference for IHI or for iSP duration. We conclude that the interplay between the primary motor cortices is normal in patients with PDS. The abnormal right motor and premotor activity observed in functional imaging studies on PDS are not likely to reflect altered primary motor cortex excitability, but are likely to have a different origin. (c) 2009 Movement Disorder Society.

24/7 Speech monitor?

I want to discuss Jerry Maguire's idea of a 24/7 speech monitor to evaluate speech.

We need to objectively measure the change in stuttering due to a treatment in order to evaluate the treatment. For this purpose, we can ask the stutterer himself or people close to him, but that is not objective. It might be useful for dramatic changes. So we need to record them and analyse the speech using an independent person.
But here we have big big big big big problems that lead to apparent success:
  • If you know that you are better recorded, you are on your best behaviour and of course try to use speech techniques learned. 
  • You are recorded once every so many weeks or months, which is 0.001% of all your speaking time. You have good and bad days and fluctuate a lot. 
  • Coming back to a clinical environment makes you more fluent because you have associated fluent speech with this environment. 
  • You might be good in reading but not on phone calls. So you need to be recorded across a variety of situations.
Virtually all outcome studies have these weaknesses, and that is one of the the reasons why so many therapies claim good results, even though you never quite meet all those people and if you meet them, they are not that much cured.

What to do about it?
One possibility is secret recording, e.g. phone them up under a false pretence. I know of a concrete example of this happening after the official recording, and suddenly the treatment was less successful. So whenever you see a treatment result divide it by 2!!!! I am not joking.

Another way is, as Jerry suggested, to give us a speech rate monitor, like a heart rate monitor, which we would carry along 24/7 and which would measure our fluency. Let me analyse his idea.

The Pros:
We cover all speaking situations over a long period. So instead of 0.001% we record all, and we record across a range of different situations. You can argue that it is a secret recording but in a fake sense. They know about it but they tend to forget.

The Cons or Obstacles:
  • You still know that you are better monitored and this will help you be more fluent. You might forget after a while but not for long.
  • Someone needs to sit down 24/7, listen to your beautiful speech, and count all stuttering incidents! Wow. I do not want to be the person who does this. It is unrealistic, so you would need to take random sample, but then you might miss this one big stuttering event. Unlike heart rate monitors, there is no automatic recording and analysis. It needs to be done by hand.
  • Not sure all speaking situations should be recorded. Maybe bedroom and bathroom should be excluded! ;-)
  • Resources intensive: imagine you have a trial of 100 patients and assume it takes one week to analyse 6 months of day per patient for one researcher, so you need 100 weeks to do it.
  • Recording speech is very memory intensive.
My conclusion:
I guess you can do it with the necessary resources and clever use of random samples, but I am convinced you need to analyse by ear unlike heart monitors.

Monday, February 16, 2009

Change google policy: Leys

Leys sent me an email on his fight with google to have their policy changed:

Tom, you might have seen my post on STUTT-L, which was an update on progress so far.  Here is a further update. The background to this campaign can be seen at

You may remember that, despite our objections, Google decided to carry on accepting ads which claim to cure or eliminate stammering/stuttering.  They defended their position by claiming that (i) none of the ads they carry not violates any applicable law, regulation or code of practice; and that, in their view, (ii) stammering/stuttering is not a sufficiently serious condition to warrant checks to be made (under their ‘Miracle Cure’ policy) on the veracity of advertisers’ claims.

But many of the stammering/stuttering ads they carry clearly violate the UK Code of Advertising Practice, which is why our Advertising Standards Authority are taking successful action against a number of advertisers; and stuttering is a serious and often life-changing condition - more serious, many might think, than psoriasis, which is one of the conditions included in Google’s Miracle Cure policy.

So I’m delighted to say that very recently, the Royal College of Speech & Language Therapists, the professional body in the UK, and John Bercow, the Member of Parliament who led our Government's recent review of speech and language services for children, have both written to Google asking them to change this policy.

In the States, Jane Fraser and the Board of the SFA have already agreed '100%' with the principle that there is no cure for stammering/stuttering and they are now thinking about the text of a possible letter to Google.  Arlene Pietranton at ASHA, who had not heard about this issue before, has promised to get back to us, after discussions with her colleagues, to indicate if they will take action.

We have also written to the European League of Stuttering Associations and the International Stuttering Association to ask for their support.

Interview with Jerry Maguire on Pagoclone

Check out Jerry Maguire's latest interview on StutterTalk: here .

Here is a quick summary of what he roughly said with [my comments]

  • Phase IIb is starting up very soon in March with 30-40 centres around the US. [great news to see the first very serious study on medication to start]
  • If you want to participate, contact him. [if you ever thought about trying medication, this is a unique opportunity and for free.]
  • They will test different doses. [important to see whether it is doses dependent and what the threshold doses is where no more benefit is seen.]
  • Phase II will be published in a peer-review journal in a few months. [finally with a too long delay for any real debate to have happened]
  • Most importantly, they extend the double blind from 2 to 8 months. [great, so this is a must]
  • Not everyone will benefit from Pagoclone. [Why? If stuttering is about dopamine level which Pagoclone indirectly changes, should not everyone benefit?]
  • Group effect is misleading because some might benefit a lot and others don't. So only looking at average is  not very informative. [I completely agree, but the extremes might also be because a lot severe stutterers got a lot better or mild stutterers a bit better which is a big percentage in stuttering severity. I can go from very dysfluent to very fluent.]
  • They check speech itself. Shorter blocks? Lower frequency? Is it correlated to doses? [This could be very interesting information]
  • Decrease of social anxiety in Phase II is not surprising because Pagoclone was designed as anti-anxiety drug. [could most of fluency effect come from this? it might increase the level at which stuttering behaviours are triggered.]
  • Pagoclone is nowhere available except in the US. [I guess it is because Indevus holds the patent. But if you know the chemical structure which is probably made explicit in the patent documents. You could in theory produce it.]
  • Question: How many have discontinued use based on his clinical experience? Answer was not completely clear. 50% have not seen any effects, and others have stopped because effects were not outweighing costs. [No directly answered. Of all the patients that he treated, I am convinced more than 50% are not using medication any more. My guess is less than 20% of this patients are still on after 12 months.]
  • Measuring should be 24/7 like a heart beat monitor. [An interesting concept. I will write a post about it]
  • He guessed that at least a reduction of 20-30% of stuttering is needed for people to keep taking the medication. [That is interesting information which we can use to compute the benefit-cost relationship. So the costs of taking medication is at least 30% less stuttering.]
  • Tolerance to medication is another issue. After some time, you either need higher and higher doses or it is not effective any more. Pagoclone has less issues. [This is a real issue. Maybe it works for eight months but then the effect goes away?]
  • Questions: are other areas of the brain impacted by Pagoclone. With more less impact that others. [But still there will be impact to the whole brain. But if Pagoclone has less impact of the whole brain, why should it have big impact on stuttering? And if a subtle impact will improve fluency, could there not be other impacts on other areas? The only way someone would do this is because the benefits.]

Friday, February 13, 2009

Sensorimotor part of internal globus pallidus involved?

Not sure what to make out of this but it looks interesting. Maybe a reader with more expertise on neuroanatomy knows what this may mean.

1: J Neural Transm. 2009 Feb;116(2):167-9. Epub 2009 Jan 10.Click here to read Links

Acquired stuttering after pallidal deep brain stimulation for dystonia.

Department of Neurology, Christian-Albrechts-Universität Kiel, Schittenhelmstr. 10, 24105, Kiel, Germany.
We report two patients, in whom stuttering evolved as an adverse effect of pallidal deep brain stimulation for treating dystonia. Speech dysfluency was observed under conditions that optimally suppressed dystonic symptoms without inducing other extrinsic stimulation effects. This emphasizes a role of the sensorimotor part of the internal globus pallidus in regulating speech fluency.
PMID: 19137234 [PubMed - in process]

Thursday, February 12, 2009

How good is Hollins?

I have said that the claims on their website are misleading: see the end paragraph of this post. They claim that 98% of HCRI program graduates say they would recommend this advanced stuttering therapy to others who stutter. 93% of clients attain normal levels of speech fluency by the end of our 12-day day program. And I said that these numbers are completely irrelevant, because you need to look at long-term data and record them secretly.

Adrian writes convincingly in support of my suspicion (apart from misspelling its as it's! :-) :
As a Hollins graduate, I'll simplify this argument. ... in my experience these techniques simply don't work very well. I attended the original three-week session and I kept up with all but two of my original group of ten after the course. I believe all but one of this group was considered fluent after the end of the course, yet all were stuttering at pre-course levels speaking with me on the phone a few weeks after we left the safety of the clinic. For me personally I was 100% fluent in the clinic following therapy, but I was still stuttering severely across the street at Hardee's ordering a cheeseburger.
Tom is correct to question these misleading success rates. It is very easy to produce fluent speech and have positive viewpoints immediately following therapy. It is another to have continued fluency in all situations after being away from the clinic for a length of time. Hollins has used these misleading statistics as the cornerstone of it's marketing and it's economic success for decades.

Adrian, do you think you can provide more details of the people? Maybe we can publish something on my blog like: comments from x out of y people of Adrian's group on their fluency? There should be balance of reporting on Hollins / HRCI.

Wednesday, February 11, 2009

They walk on solid ground, we walk on ice.

My last post was about a third way of looking at treatments. Let me give some meat. Here is the story according to me:

1) Genes or incident cause the development of an unstable speech system that cannot cope with normal demands

2) At age 2-3, the brain has developed to such an extent (mostly likely associated to use of sentences with grammar) that normal demands on the speech demands starts to exceed the abnormally low capacity of the speech system depending on the momentary situation.

3) The excess demand provokes a jam in the speech system leading to a abnormally long delay in initiation.

4) This delay is abnormally long, and causes instinctive reactions.

5) The delay and reactions are joined by conditioned and learned behaviours in response to corrective actions which in turn can make jams more likely.

6) The majority recovers because either the capacity of the speech system becomes better or changes in behaviours lead to fluent speech. For example, the ones with mild deficient capacities might be able to recover.

7) The others keep on stuttering adding further and changing behaviours, also social and psychological.

And the treatment approach is the following: 

1) People who stutter can speak fluently whenever the demand is low, e.g. reading aloud when alone and relaxed despite the abnormally low capacity of their speech system.

2) Stuttering occurs either because of a too-high-for-their-low-capacity-system demand on the speech system or triggers from conditioned and learned behaviours. And very importantly, you cannot change the low capacity, it will stay forever. But it will vary according to day form in the same way as every of your performances, be it intellectual or sports, will naturally vary.

3) The only way that a person who stutters is fluent is when the demands on the low-capacity system is lower than the low capacity AND there are no triggers from conditioned and learned behaviours.

4) An example is reading when alone and relaxed. Demand is slow because you know what to say, you do not have stress that impacts motor control, you are calm, you make longer pauses due to little time pressure, you read slower due to a lack of fighting for speaking time. Triggers are not triggered because there is no fear, no group pressure, no time pressure, or any other situations that you are conditioned for.

5) The key in therapy is to enable people who stutter to put less demands on their low-capacity speech system and to unlearn trigger to conditioned and learned stuttering behaviour. All therapies act on either of the two to achieve a reducing in stuttering.

6) Fluency shaping creates a new way of speaking and therefore the triggers from normal speech are not present, and this new way puts less demands on speech. For example, a gentle onset delays the start of vocalization and hereby gives the speech system more time to be ready. Moreover, the speech rate is slower, again helping to decrease demand. And fluency shaping is probably recruiting other brain regions with normal capacity processing, because the speech is not automatic and a lot of prosody is used.

7) Stuttering modification works on the stuttering event to identify and modify it which effectively means unlearning all unnecessary learned secondary and primary symptoms which again help triggering stuttering events. And a lot of psychological work to unlearn triggers of stuttering behaviour and strategies like longer pauses.

8) What I suggested is that both fluency shaping and stuttering modifications are indirect methods, especially fluency shaping. And further, the key is to work directly on lowering the demands on speech system and unlearning triggers or/and learning antidotes. You ignore the stuttering events and you do not re-shape your speech. You use your normal speech that you use for reading alone, and create the conditions that you are able to do it in more demanding situations processing and trigger-wise.

9) Here are a few examples. To reduce demands: longer pauses (well for some like me, just pauses would already help), slower speech rate, think before you speak, reduce stress and anxiety that impacts speech performance.  To reduce triggers: do not fight stuttering actively, ignore stuttering, focusing on fluent speech, repeating a sentence that you stuttered until you can say it comfortably fluent, focusing on normal breathing and so on.  Everything I wrote down are natural things that a good speaker does any way, and we are able to do them. All fluent speakers get away with a lot, we don't. We need to reduce the demands on our speech system and we need to unlearn the stuttering behaviours. They walk on solid ground, we walk on ice.

10) Needless to say that this is about changing behaviours, and we all know that a behavioural therapy is difficult and relapse is likely. But what I suggested is that this approach is the most direct way to the goal. I am not saying fluency shaping or stuttering modification do not work, but from my framework they look a bit as not coming to the point. It might well be that these approaches are used because they are easier to implement than a direct method.

OK. That's it! And please don't make the comment: So Tom if you are right, then why don't you try it yourself! Rest assured, I have asked myself the same question! :-)

Tuesday, February 10, 2009

Do we need to work on stuttering?

There are two main behavioural treatment approaches: creating fluent speech and modifying stuttered speech. Creating fluent speech is mainly about fluency shaping where you create a new way of speaking that may include gentle onsets, rhythmic speaking and binding syllables, but you also can include treatments emphasising on coastal breathing which leads to fluent speech. Modifying stuttered speech, or what I call dysfluency shaping, is mainly known as van Ripper and post-block modification therapy. You work directly on your moments of stuttering, and you try to modify them. You identify them, you soften your tension, you reduce secondary symptoms associated, and so on. [And there are treatments with external help: pharmaceutical and auditory feedback devices. But no clear evidence for effectiveness.]
I am currently looking at a third alternative behavioural treatment. And the idea is simple. Every person who stutters has the potential to speak fluently, and the vast majority can for example read fluently when alone and in no stress. So the issue is not an inability to produce fluent speech, but an inability to produce fluent speech in realistic more demanding speaking situations where demand can be stress, emotions, formulating your thoughts, preparing what you want to say, uncertainty as to what to say, trigger to learned stuttering behaviours, applying social filters and so on. Therefore, an alternative would be to learn behaviours that allow you to be in a state that allows you to speak fluently. Simple tools are speaking at a slow rate, making longer pauses, staying relaxed in stressful situations, and so on. The advantage is that you do what comes natural to you. You not need to learn something unnatural and you do not need to remind your brain of stuttering when working on stuttering events. 

Wednesday, February 04, 2009

Don't believe in IPhone

IPhone is definitely a very cool device, but is it useful in stuttering treatment? The Hollins Center has a press release out: see here. They claim that they use the IPhone successfully to monitor speech targets. StutterTalk has an interview with Prof Webster: see here. They have asked very good questions (some from myself! :-) and Prof Webster did a good job in answering. 

I am convinced Hollins will drop or limit the use after a while even though I agree with them that in principle it is not a bad idea to get more objective feedback. I have seen the phenomena time and time again. Failing to get high tech working in real life. Here are the facts: it is very difficult to record in noisy environment unless you spend a lot of time to fine-tune to an environment, but you have to do it for all environments. And you have to hold up the IPhone to record, which is very artificial. So you need to work with microphones. And then the measurements. I am sure that is not very stable as well with significant error bars. The costs of using the technology far outweights the benefits. So at the end of the day, they might use it as a recording tool and listen to the recorded speech! Trust me: I always prefer low tech whenever possible. Why? Because I understand high tech! Every time I tell hyper excited people to stop using or developing high tech and go for low tech whenever possible, they do not listen. So I must let them waste their time, and every single time I ask them a few months later, they have stopped using it...

On the other hand, it is a brillant marketing campaign; attaching it to the icon of the day the IPhone. The press release is all over the internet and I am sure their web traffic will benefit for a long time. It is not about the device but about attracting attention to the center. I am also concerned by the statement they make on the main page.
98% of HCRI program graduates say they would recommend this advanced stuttering therapy to others who stutter. 93% of clients attain normal levels of speech fluency by the end of our 12-day day program.
Isn't it a bit misleading because the relevant measure is long-term success not the short-term? First, it is obvious that people would recommend a therapy. They are fluent and have seen the Hollins therapists working hard and honestly. Second, based on my own outcome research, I know of another fluency shaping therapy, the Kassel Stuttering Therapy, with similar numbers after 3 weeks. Virtually everyone was virtually fluent. Unfortunately they dramatically worsen after one year. And we should not forget that they knew that they were recorded, imagine how the results are if you are recorded secretly. So they should go for long-term measures. I am not saying the therapy is not helping. I am just saying that long-term is what they should talk about.