FND Functional neurological disorder recovery/FND campaigner Tom Plender interviewed on Sky News

Musician and FND campaigner Tom Plender interviewed by Alice porter for Sky News discussing his FND journey, also featuring FND expert Professor Mark Edwards and the charity FND HOPE.
Useful links for further information-
FND Action website - www.fndaction.org.uk/
FND Hope website - fndhope.org/
A great resource for those recently diagnosed with FND -
The landing Pad - fndportal.org/the-landing-pad/
Tom Plender website - www.tomplender.com/
Tom Plender Twitter - / tomplender
FND Portal website - fndportal.org/
FND Portal Twitter - / fndportal
Neurosymptoms website- www.neurosymptoms.org/en/
#FND #functionalneurologicaldisorder #fndawareness #functionalseizures #FNDAware

[@mrssuzybuck2070]

FND is very unpredictable for sure iv had this since 20.21

[@rohinihyde4766]

After 17months of seeing various neurologists in Australia I have been given an FND diagnosis. I was a fit and healthy 68 year old and lost my ability to walk soon after my 1st AZ jab - could there be a link - only time will tell I guess.

[@susibrown7972]

You’re not alone. My FND was triggered following an accident but i have spoken to other patients in Canada, the US and the UK who are in a similar situation as you.

[@lauraf3768]

Tom please help - I have had an emergency telephone appointment with my neurologist this week as in addition to severely affecting my legs my FND has now progressed to me beginning to lose the use of my right arm hand, and yet again I have been categorically told there is no treatment for FND apart from rest, pacing and lifestyle changes. I mentioned your case and you campaign and Prof Jon Stone and he told me he attends conferences with Prof Stone and not to believe all the stories I read. I am at a loss. My GP will not refer me outside the area until I have completed a very long treatment programme with a psychologist In my local mental health team which I have been waiting for for over six months, but it is my FND that is affecting my mental health. I explained this at my last mental health check up and they simply said they can't help with FND No healthcare professionals in my area seem to want to help. Please let me know what treatments you received to get your health back. I can't face the rest of my life like this.

[@seagullsg784]

We sound similar, I've had fnd that's badly affected my legs for 3 years. I've been through the nhs and been told the same, rest and pacing. Pacing helps but you have to be consistent with it. Buy some hi top velcro trainers, reebok are the best, Nike soles are too thick which interrupts signals to the brain about how high we are off the ground. Strap them babies tight and you should feel somewhat plugged back into your legs. Also don't panic about your arms as they will get tired as you are using them instead of your legs to get yourself up and about. So back to pacing, which actually I've found had helped me to be kinder to myself (it's basically self care) and that's helped me to get a bit better this year. Best of luck.

[@itisBoodge]

Hi Tom, I was diagnosed with FND late last year. I had tremors in my hands and feet and also bilateral leg weakness for 6 years. My GP thought I was just an anxious young adult, so i was on beta-blockers for 6 years. After being diagnosed, I left my dream job in London and move back home. Next month I have an appointment with a neurology consultant in my city for the first time. I would like to ask for your advice on what questions I should ask to the consultant. To be honest, I am still lost after being diagnose. Thank you very much.

[@tomplender1378]

Hi the most important thing is to find out what treatment your consultant is able to offer and their level of expertise in FND. The kind of treatment will depend on what type of FND you have, it sounds like you probably have the movement disorder type so the standard treatment would be neuro- physiotherapy probably in conjunction with some CBT , if done properly it can be very effective. Here's some info to read that may help you prepare and which you can show to your neurologist- www.fndaction.org.uk/fnd-action-campaign-informthedoctor-functional-neurological-disorder/ also there is loads more info and resources on the FND page of my website - www.tomplender.com/fnd-articles. hope thats helpful let me know if you need any more info and good luck 👍

[@tomplender1378]

Just remembered this, it's by a friend of mine called FND portal, it's useful information for anyone who's been recently diagnosed- fndportal.org/the-landing-pad/

[@itisBoodge]

@@tomplender1378 Unfortunately my local IAPT declined to offer CBT. Their reason for it is that I have FND. I do not quite understand why people with FND are refused such an important service. I might be doing something wrong.

[@tomplender1378]

@@itisBoodge Generalised CBT on it's own is not going to be at all adequate, you need specialised CBT given in combination with neuro- physio, I would speak to your neurologist about this and try to get referred for multidisciplinary treatment.

[@glo-coopmumma]

What ‘successful treatment’? Those of us suffering wish to know!

[@tomplender1378]

Hi I had many months of multidisciplinary inpatient treatment at the National hospital for neurology in London which comprised of Neuro-physiotherapy movement re- training, CBT , and occupational therapy.

[@tomplender1378]

Your neurologist is wrong , can I ask the name of your neurologist and where you are being treated, you may need help from FND action the charity I work for to support you with this

[@lauraf3768]

Thank you for your support with this Tom it is very much appreciated. My neurologist is Dr Sumeet Singhal. I am seen at a clinic by Dr Singhal at Newark and Sherwood District hospital but Dr Singhal works for Kingsmill Hospital In Sutton in Ashfield which is part of the Nottingham University Hospitals NHS Trust. Any help would be very much appreciated. I am only 40 years old and have already lost years of my life to this disorder. My life is limited already and the fact it has progressed to my arms and my neurologist has completely overlooked it is very distressing.

[@lauraf3768]

Dr Singhal is the one who diagnosed me and pointed me in the direction of Prof Stone’s website. But when I asked to be referred elsewhere he thought I was questioning his diagnosis which is not the case. I fully understand I have FND I would just like help with treatment as I have seen cases at the Walton Centre in Liverpool where people have been successfully treated too. I also have rare sensory symptoms which no one takes seriously or attributes solely to FND - these are distressing and disabling and I have read on comments on other videos that other sufferers have similar problems. I would just like access to help.

[@tomplender1378]

@@lauraf3768 There are certainly treatment options for your situation, to simply point you to a website and say you need 'rest, pacing and lifestyle changes' is not acceptable given the severity of your condition [you are not alone in this, such treatment sadly is very common]. It's clear your neurologist is not up to date or expert in FND. In your situation multidisciplinary treatment comprising of Neuro physiotherapy, Occupational therapy and CBT would be the likely approach recommended by an FND expert. My advice is to contact Kim at FND action, she will be able to advise you on how to deal with the situation and can provide advocacy and support in challenging this. Her details are - [e-mail] . Also here is some information you may find helpful to read and that you can give to any medical professionals who are not properly informed about FND. www.fndaction.org.uk/fnd-action-campaign-informthedoctor-functional-neurological-disorder/

[@lauraf3768]

Thank you for taking the time to reply to me and help me Tom - it is very very much appreciated.

[@annettewheadon7212]

I got fnd fits n tics it sucks

[@sumk66]

Its jinn possession listen to ruqya..