Hi. I've been invited to a Virtual FND General Education Group, organised by South London and Maudsley NHS Foundation Trust who work closely the Neurology department at Kings College London.The purpose of this one-off group is to give me a further understanding on what Functional Neurological Disorders are and give me some advice on self-management of my symptoms while I'm waiting for my appointment.
Has anyone else been invited something similar?
Nope, but I live over near Bath… so not sure if it’s more local to you? I’d be really interested to hear what they have to share, so if there’s any possibility of an open invitation to this online group do please keep us posted?
I hope it is helpful for you.
I've looked and it's only for patients awaiting appointments at Kings. Family members or carers can also attend the meeting but that's all. I'll definately give an update on the meeting and any pointers they give.
No such invitations in my area . I do know that a researcher , Lisa Guy at the Maudsley has just done some interesting FND research, and got good results for the patients who were given treatment from a multi disciplinary team. You seem to be in an FND hotspot ..so do keep us posted. With thanks
Of course. I'll feedback after the meeting.
link to Lisa Guy research
link.springer.com/article/1...
Really interesting article.
Interesting article, proving that an intensive multi-disciplinary early intervention approach is the way forward like Re-Active's.
Also interesting to note that a drug alone approach is not the way forward, hopefully some medical professionals take note. Plus if they can be the final resort, even better.
I have made Erin, the newsletter editor, at FNDHope aware of the article, and he was hoping to include some reference to it in the next letter, as he thought more people should be aware of this progress ... but anticipating more research would be necessary .. (and probably a financially healthier NHS ) before there is much 'action'
I am guessing he is aware of Re-Active's success stories. They use the same multi-disciplinary goal approach and add in a fun external focus (that diverts attention away from the symptoms, ie bubble blowing (a breathing technique that doesn't draw attention to the fact that you are doing this to regulate your nervous system) and use a "layered" approach as if something isn't as effective on its own, you can add other layers until it is.
They usually start with the biggest part of the pie, ie the area that is causing the most difficulty with daily life.
Erin is still busy studying ..he wasn't aware of the Lisette Guy article, and I don't know about his knowledge of RE -ACTIVE.
I haven't checked to see if FNDHope are promoting the Re-active approach to self help.
Pretty sure some of the members are also members of FND Hope. I only joined here and also the paid subscription of Re-Active, so don't know about Erin and their Newsletter.
The multi-disciplinary approach the study shows is what they use in their centre programmes, some insurances cover the treatment.
Hi many years ago another London Hospital used to do a 10 week attendance intro course Group to see which people with FND would suit an Inpatient FND Rehab program. I suspect this is on similar lines and done virtual due to lessons learned in the past with travel difficulties and with Covid etc.
The main thing Neurologists/Neuro Professionals want to get across by using a Group environment, is that this is a common and complex condition which affects people differently, giving them a whole range of random symptoms but all with the same diagnosis.
TYPE: You will need to focus on the type you have i.e the major symptoms you experience daily. Often there are evident areas: Movement, Seizures, Tremor, Black Outs, Speech Issues etc.
GOALS: It would be useful for you to think about in advance of the virtual meeting; what your goals are in everyday life or future living. I suspect this aspect of the education process has not changed over the years, and they will rely heavily on Cognitive Behaviour Therapy techniques to `retrain' your brain (thinking processes) in forthcoming sessions.
SELF-MANAGEMENT: What I will say is whatever medical road you take and in whichever format, the outcome will be all geared to you Self-Managing your daily symptoms. There was no specific tailored approach to FND years ago or any sure fired way to reach a cure, that is all down to your efforts within the retraining system, generally on your own but with some guidance. Remember everyone will be clumped into the same Group, some therapies will work for some people, not for others - that is perfectly okay.
As I said everyone is unique in FND with a wide range of causes and triggers, so just take onboard what is explained and offered, then concentrate on what helps you reduce or limit your triggers and better manage your daily life.
There are no 100% answers in this condition or guarantees, especially from the medical professionals who will tell you they understand the condition. Education is a two-way street in this process, as they cannot fully understand your version of FND, because they do not have to live with your symptoms!
Good luck,
Look for the calm in the Storm!
Hi, I and my wife(now my carer) were invited to Kings neurology department after I was diagnosed with FND in 2019 for an information seminar, it lasted about two hours and there was about 40 people there (9 were patients) it was ok as my wife learnt more about it as it went through the different dept ie; neurology, physio and psychology. Unfortunately 2hrs was not long enough and they ran out of time and so didn’t get to the bit that I needed about memory issues. But definitely worth it as information is key to understanding, as it was face to face you get an insight of the different affects it has on people. Because of the 200 symptoms people present in different ways like I have problems walking, talking and thinking and others are in wheelchairs and others can’t talk or speak in tongues. I hope you enjoy it and get the information you need. Kevin
Hi everyone. I enjoyed the education Group, but alot of it I knew from my own research. However it was interesting to hear other people's journey.
Were there any nuggets on how to reduce the shaking and tremors, or prevent them from gaining more territory? In hope!
No not really. They spoke about distraction and physio option but no, no nuggets sadly
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The NHS don't make this easy..
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