Thursday, May 09, 2024

Breakthrough in understanding stuttering OR NOT?


A team in Göttingen has done real time scanning to show the mechanism of stuttering in every single gory detail. And the first author Daniela Ponssen explains their work in this YouTube video.

It's fascinating to see how a person stutters, i.e. how the muscles and associated body parts moved by the muscles are producing dysfluent speech. Congratulations!

BUT to be honest, I am far from enthousiastic of this type of research when it comes to understanding stuttering, because understanding stuttering is not about understanding what the muscles do, but why the brain has sent those instructions to the muscles.

It is like showing in scans how a person pulls the trigger on a gun and the bullet hitting its target. In a sense, it's cool but in another way very dull, because what we really want to understand is why did the brain sent the instructions to the muscles to pull the trigger.

The brain pulls the trigger, and not the muscles. And the stuttering brain is messing up speech not the muscles involved in speech. 

Prof. Martin Sommer, who has done ground-breaking imaging work before and is actively involved in self-help, is convinced that: "By showing us the mechanical origin of the symptoms, real-time MRI improves our understanding of stuttering and will be an important tool in further research. And by enabling us to directly see where the internal speech muscles and organs make "wrong" movements, this method will also assist us greatly in the treatment of this multifaceted neuromuscular disorder."

In the video, they propose to put stuttering in the domain of neurogenic movement disorders. They also say that real-time biofeedback from these scans help in treatment, i.e. in the acquisition and reinforcement of new fluent speech patterns.

I am not convinced yet. I would like to see more real-time scanning up-stream, i.e. on the brain itself.

And even then, I am not convinced it will truely make us understand stuttering: we might see what the brain does, but why the brain does it is an entirely different question.

Source:
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(24)00624-X/abstract
https://idw-online.de/en/news833011



Wednesday, December 27, 2023

A breakthrough? Is this the best example of a neurobiological basis of stuttering?



You have to check out this article by Szepetowski & al.

They took a family where many members stutter, isolated the responsable gene and studied their brains, created a mouse with the same gene issue, studied the brain of these mice and compared them to the brains of the stuttering family members and the other research findings.

They detected changes in cortico-striatal-thalamo-cortical loop tissue composition, consistent with findings in affected family members and also significant microstructural changes in the left corticospinal tract, as previously implicated in stuttering.

I am not an expert and didnt delve deep into their research, but this seems to me the strongest concrete evidence for a neurological basis for stuttering. It is fascinating to see how one tiny little gene leads to a different or missing protein in the brain impacting the brain development leading to abnormal neurobiology causing a low capacity speech system leading to an increased frequency and delay of being able to articulate what you know you want to say, which then leads to all kinds of secondary behaviours such as emmms, blocks, tension, word substitution and avoidance of situations leading to social reactions which then back feed onto your brain which under stress and pre-conditioned will have more and longer stuttering events even when the brain would have been able to say it fluently.

Beautiful... in a certain way... terrible for us who are afflicted with the disorder!

Happy Xmas!

Abstract

Stuttering is a common speech disorder that interrupts speech fluency and tends to cluster in families. Typically, stuttering is characterized by speech sounds, words or syllables which may be repeated or prolonged and speech that may be further interrupted by hesitations or 'blocks'. Rare variants in a small number of genes encoding lysosomal pathway proteins have been linked to stuttering. We studied a large four-generation family in which persistent stuttering was inherited in an autosomal dominant manner with disruption of the cortico-basal-ganglia-thalamo-cortical network found on imaging. Exome sequencing of three affected family members revealed the PPID c.808C>T (p.Pro270Ser) variant that segregated with stuttering in the family. We generated a Ppid p.Pro270Ser knock-in mouse model and performed ex vivo imaging to assess for brain changes. Diffusion-weighted MRI in the mouse revealed significant microstructural changes in the left corticospinal tract, as previously implicated in stuttering. Quantitative susceptibility mapping also detected changes in cortico-striatal-thalamo-cortical loop tissue composition, consistent with findings in affected family members. This is the first report to implicate a chaperone protein in the pathogenesis of stuttering. The humanized Ppid murine model recapitulates network findings observed in affected family members.

Monday, November 13, 2023

A Member of Parliament who stutters!

 


On October 24th, I got sworn in as a member of the Luxembourg parliament, which we call the Chamber of Deputies. We had our national elections on October 8th. I was one of two leading candidates for the Central District of Luxembourg among 21 candidates in total on our list and received the most votes. As we live in times in which you like or dislike people according to their political views and not because of who they are as a person and behave towards yourself, my party is called the Alternative Democratic Party, which I would like to think of as the political middle ground between a Joe Biden and a Donald Trump. In Europe which has undertaken a significant left turn over the last two decades, some would say that I am right of center. We often call ourselves liberal-conservatives... So now you can decide whether you still like me or not! ;-)

It is a bit surreal, because the very last thing that I had imagined as a stuttering teenager was that my future would lie in politics and in being a member of parliament for five years! I would have been horrified to have to speak to potential voters, attend podium discussions and speak in parliament. In a sense, I am still a bit horrified, but I just choose to apply the simplest and hardest trick for people who stutter "live your life as if you are fluent and ignore the thoughts your brains generate regarding potential future speaking situations". 

I hope I can give people who stutter, especially those that are still in their formative years, hope that they can achieve nearly everything that they want, despite their stuttering, but only if they "live their life as if they are fluent and ignore the thoughts your brains generate regarding potential future speaking situations".  Of course, we do have a dysfunction as we cannot say exactly what we want to say even though we know exactly what we want to say at that moment, but the handicap is mostly derived from our own thoughts putting limitations on ourselves. So best to just do it, and see what's happening. If you can do it, great! If not, then you know.

Try it out!

And my apologies, to my blog who has suffered from a lack of posts due to my other engagement.s

Sunday, February 12, 2023

On live TV in a challenging debate


Maybe this picture is inspirational for some of you who also stutter. I was on live TV in a challenging talk show scenario where everyone was "against me". Just goes to prove that we can speak our mind even when showing visible stuttering.

If you wonder what the show was about, it was about the Luxembourgish language, called LĂ«tzbuergesch, and I was on the show as the co-author of a book on the decline of the Luxembourgish language.

I did stutter and have blocks, but I survived and I have to say that ALL comments I got on social media were positive. The majority congratulated me for defending our language. Many admired my courage to speak out on a sensitive issue, despite my stuttering. And even for those you tried to denigrate my efforts by writing stuff like "You were just stumbling along cluelessly", I created a positive twist and made it a teachable moment by explaining to them that I am a person with a speech handicap and I challenged them (or shut them up, if you want the politically incorrect) with the question "Should I as a person who stutter not have the same rights to speak out?"

Friday, January 01, 2021

Call for candidates for IFA's research and publication committee, which I chair.

If you are a member of IFA or if you want to get involved, here is a call for volunteers at the International Fluency Association. IFA is run by professionals but anyone can become a member and, with the right expertise, also join the committees.
The following IFA committees invite applications for positions. Committee chairs determine committee membership. 
Charges of specific committees can be found at https://theifa.org/about-us-2/about-us-2/706-international-fluency-association-operational-procedures 
Please contact individual committee chairs to express an interest in joining a committee. 
Committees seeing volunteers: 
1) Membership: seeks a new member, preferably with expertise in desktop publishing, who can assist with development and distribution of a newsletter. Please contact Shelley Brundage (brundage@gwu.edu) 
2) Research: seeks new members with a track record in research, such as a PhD, to take on tasks that the committee has given itself: please see mission statement on IFA website. Researchers from non-Western countries are encouraged to apply. Please contact Tom Weidig at tom.weidig@gmail.com 
3) Finance: one additional member is being sought, specifically to assist in Joint World Congress financial arrangements. Please contact Shelly Jo Kraft (kfraft@wayne.edu) 
4) Practice: Seeks additional members, particularly those who can help, by increasing committee membership diversity, in its mission. Please contact Joseph Agius (joseph.g.agius@gmail.com ) 
5) Advocacy: seeks to add a person who clutters. Please contact Seth Tichenor (set@msu.edu)

Sunday, September 06, 2020

Joe Biden: Is it really dementia, or stuttering, or a decline of his ability to compensate?




We are close to an important presidential election. Four more years of Trump - the end of the world for Trump haters. Or four years with Joe Biden - a disaster for Trump fans.

Truth and fairness are the two first victims in such viciously fought campaigns. One point of attack is to look for weaknesses in a political candidate and create attacks highlighting his weakness. So it's not about policy but about the person himself.

One over-arching weakness, of both candidates actually, is their age. Joe Biden is 77, and Donald Trump is 74. Biden comes across as older (which he is by only three years) and frailer while Trump still shows off his aggressive bulldog full of energy whereas Biden comes across as the soft spoken grandpa.

This video is a good example of attacking Biden on frailness with the underlying message: "Do you want a president of the United States who is frail? Listen to how he bungles his words! This man can't think clearly! He shows the first signs of dementia!"

He bungled his words. Everyone can hear it. For political propaganda, it's not important why he did it and if it's only two sentences out of hundreds spoken per day, because the swing voters will watch this uncomfortable scene and might well ask themselves: "OMG, I dislike Trump but Biden is too frail to become president!"

As people who stutter, we of course might know better. This video might not show at all first signs of dementia but his bungled words are due to stuttering. I myself had many such instances, even as a teenager, where my sharp mind was just caught up in the struggle to get the right words in the right order out. My thoughts were crystal clear. My spoken words that of a bumbling idiot.

So we could defend Biden and say: Look it is just stuttering. He is totally fine otherwise!

But age might well play a role.

I don't think that the video are evidence for dementia. The video is a vicious over-simplification for political purposes. However, the scene might well show his increasing inability due to his age to effectively use the compensatory mechanisms that he learned as a teenager to generate fluent speech and be an effective communicator despite having a stuttering brain prone to traffic jams during speech production. He did brilliantly over a fifty-year career but those mechanisms might have weakened and the stuttering will slowly re-appear.

Interestingly, Biden had not put forward stuttering as a main topic in his previous campaigns, though he did in recent years talk about his stuttering as a child and teenager. His outing however only happened as vice-president with a job that many consider as the end of your political career. I always found his outing strange, because I never heard him stutter or bungle his words. Only during this campaign after fifty years of campaigning, has he put forward stuttering as a main theme. Make no mistake. The campaign managers did not put Brayden Harrington in the spotlight to show what a great person Biden is. He struggled, won, and now helps those that struggle to win. No, outing yourself as a stutterer does not win you extra votes from swing voters at all.

I know why what they did it. His campaign managers are desperatedly trying to get the word out that he sometimes cannot get the word out, because he is a person who stutters and people need to show compassion, feel empathy, and have understanding for his bungling of words.

They know that this explanation, while perfectly reasonable, is a thought process too complex for many swing voters.

But they have no other choice, because he can not not speak as a presidential candidate.

That's the dilemma.

Thursday, September 03, 2020