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!

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? :-)

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.

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.

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.

Busy

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.

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.

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.

And,

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.

Other blogs on stuttering

Here are my competitors. :-)

I'm Stuck No More
Stuttering Blog
Smithy Strikes Back
1Stutterer
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!

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 ?

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. :-)

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 gmail.com. It would be interesting for me and the other readers to read about your personal experiences. You can make your comments anonymously.

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...

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.