2nd podcast from the FND roundtable panel now available.

[210272]

bit.ly/3YRuKq7

It was prerecorded and came out on 29th August but I haven't had internet access for a while so have only just seen it/heard it.

[MichelleL_BlueFaery]

Thanks for sharing!

[Leaf100]

Thank you!

[Lady4]

Thanks for sharing, that Podcast release on "An Updated Round Table Discussion on FND: How and Why Does FND Occur?" by the experts, its really informative and I hope that it helps professionals to deliver the diagnosis more softly and to explain it better.There was a really good video I shared with my son at the beginning of his journey and it was all about how we all see things differently and I think it fits in well with our "brain predictions based on past experiences and based on a range of concepts that we have organised and refined through time" - quoted.

[210272 in reply to Lady4]

I hear you and I'm glad you found a good video for your son What I find hard is the terminology in papers like this doi.org/10.1176/appi.neurop... since they seem to be inferring that the symptoms are caused (precipitated) and perpetrated by patients' 'maladaptive' cognition and behaviours etc. I don't know how they can know this is the case for all patients unless they were with them at the time and able to observe those 'maladaptive' behaviours etc.

Also I think the panel are failing to acknowledge that we know (from papers like 'the function of 'functional' a mixed methods review) that 'functional' means 'hysteria' in the minds of some neurologists and that it is used to convey one meaning to patients and another to our doctors which mitigates against the patients as partners era of medicine. There's another paper called something like 'limits to truth telling in neurology' which seems to infer that neurologists use the term 'functional' strategically (although that could be in the 'what is 'functional' doing in neurology?' paper and I may not have remembered the title of that correctly) and that they are, effectively, allowed to lie to us so we don't hate them. Hmmm.

To fully understand the thread/podcast content, the Neurology Journal readers will also need to have read Kanaan's 'territorial claim/expansion' commentary which accompanied the FND subtypes paper but I don't know if I'll have enough spoons to unpack that paper for them although I did send it to the podcast co-ordinator with my commentary on it. As is so often the case, part of it is now behind a paywall but I sent her the full version.

It'll be really interesting to hear the final part of the podcast which I think is going to focus on the delivery of the diagnosis. I hope they will agree that giving the dx during a 3 minute consultation in a corridor (as happened to a woman in the UK fairly recently) and then telling her to 'google it' is not acceptable. I hope they will reference the Genetic Alliance UK's 'good diagnosis guidelines' since they are excellent

[Lady4]

Thanks for all the references, your insight and sharing with us. I haven't read the link yet (getting ready for work) and I must admit I had to look up the meaning of maladaptive to start with, there were lots of examples (in the dictionary), this being one:

"Thus, the maladaptive patterns of behavioral and emotional self-regulation, and reactivity to the demands of the surrounding environment, become more entrenched."

This does fit in with with the fact we learn copying strategies (patterns of behaviour) to deal with stressors and these become second nature and very hard to change. This ties in nicely with "brain retraining".

Our children are often exposed to a lot of negative social media, which is very difficult to wean them off and think they need to look and behave in a certain way (thats another bug bear).

School tomorrow, wish me luck.

[210272 in reply to Lady4]

My pleasure I'm just not convinced that onset and perpetuity of symptoms of FND is always due to 'maladaptive' cognition and behaviour etc. Also I think their computer analogy is wearing thin, especially for people who have read 'why your brain is not a computer'.

Totally with you re the potentially negative impact of social media on children and am very glad it wasn't around when I was a kid. There are positives too, of course, eg when we 'find our tribe' (be that other people with rare conditions or other people with autism, mental health concerns, chronic conditions etc etc) and for children who are excluded from schools it can be a lifeline.

Hope the school day went OK

[Lady4 in reply to 210272]

Thanks, early days but is attending full days and no red flags. I have to be mindful not to push him too much but he has missed nearly a years education at a critical time.

[Zozo87]

I am very interested to hear more about this finding regarding Oxygen: when monitoring the brain in FND patients they found their brains require completely different oxygen levels to perform functions.

I think this is so interesting and hope this leads to treatments.

They used the word ‘different’ I am wondering if this means More?

My thoughts immediately went to:

What increases oxygen in the blood?

Deep breathing exercises help.

B12 supplements help.

Iron.

Outside in fresh air or opening windows and doors in your home.

Very interesting.

Also the finding that ‘some specific brain circuits have dysfunction’ being an import circuit our sense of agency (we are the agent for our actions) and our limbic system (emotional) and our motor …. Might one day lead to treatment for example brain stimulation of the specific areas.

[210272 in reply to Zozo87]

These are really interesting questions and observations, Zozo87 and you could post them in the comments under the podcast (if you tag Neurology Journal by typing @Neurology Journal their readers are more likely to see it). The panel members are under no obligation to respond the questions I've sent them but you might get a response from one of their readers. Vascular neurologists are also getting involved with studying FND so you might also want to contact this person with your thoughts:

Why would a vascular neurologist be interested in studying functional neurologic disorders? Learn more in the latest Neurology DEI blog by Z Paige L'Erario, MD, NYS, CRPA/CPS-p: bit.ly/3OtSlYS

[Shimmyaway in reply to Zozo87]

The oxygen aspect intrigues me , as one of my worst symptoms is that I can't go into indoor spaces unless the door or window is open, or the temperature low, without starting to shake. Whilst for the most part I am intolerant of electronically generated sounds, as they bring on shaking, in the open air the problem is not as bad.

[210272 in reply to Shimmyaway]

Shimmyaway - that's a really interesting observation since it demonstrates the impact this symptom has on your life. Can you post it in the comments thread under the podcast so that your voice is heard?

[210272]

The third one is out but there was a tech glitch so I could only hear about 30 seconds of it. Hopefully they'll fix it and if they do I'll post it here.