Functional Neurological Disorder - FND Hope
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New trial for specialist physio for FMD

Hi All,

the other day there was a tweet from Dr Jon Stone to say the above trial had received a grant for £1 million to compare standard treatment for movement disorders with the intensive 5 day physio at St George's hospital, London, delivered by Glen Nielsen. He will be overseeing the trial involving 263 people at 5 locations in the UK run by physiotherapists trained in his methods. It is due to start autumn, this year.

Type in physio4FMD NIHR for more info.

Great to think there is progress!

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I was promised over a year ago now to get onto this Physio programme and then in August they told me they had mis placed my records. And would get back to me and nothing! You phone them and they just say your on a waiting list. But I have spoken to so many people that have gotten onto the programme so quickly. It's so frustrating. We all need the help!

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physio4FMD NIHR

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I went on this in 2013 for my FMD of gait. I walked 19 steps/minute on entry, 26/minute on exit - but still with robotic gait. I improved slightly for a few weeks afterwards but then had a severe crash of energy within months (I have ME) and ended up worse than when I started.

Whilst in hospital my walking was videoed and measured twice a day. I was told on leaving to only walk for as long as I could manage before the robotic gait kicked in - sometimes that was several metres, sometimes after 2 steps forward.

I had talking therapy sessions with Glen each day, (mainly about not thinking about what was going on with my legs) whilst the physio consisted of walking up and down a line on the ward floor, and round and round the bed in various different styles - on heels, on toes, backwards, with hands out in front...

I'm not sure it made any real difference tbh. When my condition started to dramatically improve 18 months ago there was no physio/meds/psych involvement there at all. I had been resting an awful lot ahead of my brain surgery though, and so probably not trying to walk as much.

Glen told me whilst we were doing our 'Ministry of silly walks' thing that the aim of it was to try and 'reset' whatever pattern had gone wrong in the brain and to return to semi-autonomous walking. That didn't happen with me during my in-patient stay, we couldn't find a trigger. And the psychotherapy didn't work either - hardly surprising as I had been under my neuropsych for a year by then and she was clear my illness was not psychosomatic.

It's not a panacea...it may help some people though. For me I found the FND got better by itself over time. I live with only occasional 'flares' these days which right themselves on resting, and I think that not persisting with the walking but allowing the body to 'reset' was the one piece of useful advice I did get.

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Thanks for your honest and detailed response! It’s coming up on a year that my FND “onset”. I was supposed to start physio last year, but it was right in the middle of two hip replacements, so I postponed until this upcoming March, figuring that if we’re going to be working on my gait, having legs of equal length would be handy. In the meantime, psychotherapy has been a joke: I haven’t met one that knows anything about FND, but worse is that my psychotherapist is part of my diagnosing neurologist’s organization. I get the impression that she believes I’m nothing more than a needy borderline, and so far after three sessions she’s told me repeatedly “Why are you even bothering with therapy” because I can’t identity my goals. When I say that FND makes that difficult, she stares at me blankly.

To date, I have had to figure out what’s going on with my by myself. This is a difficult disorder on its own, and it’s far worse when the solutions that are offered so gleefully don’t work or are all that anyone has at their disposal.

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My gait disorder comes from not being able to put my left heel on the ground, standing or walking. It's as if my brain is telling me I cannot put weight on that side of my body. This puts a strain on my right while the muscles in my left foot and leg contract and twist to avoid weight bearing.

This began about 15 years ago and has got steadily worse, resulting in losing my job, so I have all the time in the world to think about every foot step, and I've been on crutches for 2 years. Just had 5 days physio/hydrotherapy in Gobowen orthopaedic hospital (wonderful place) to strengthen my left hip and muscles. Feel stronger for it, and determined to keep up the exercises. I've also stopped using crutches. I am also waiting for intensive therapy with Glen Nielsen probably in 12 months time, hence my interest in this new trial.

Reading the posts here has made me realise how diverse the experiences are for us all, and that there is no one size fits all approach to FMD. I do know that concentrating on the weird sensations in my foot etc and hence my attitude to walking exacerbate my problem, as so many physios have told me, but I cannot switch that off.

One ray of hope for me came last night when I went to a Zumba class to see if music/dancing would distract me . I did about 25 minutes, and it felt really good to be moving like that. I could sense my brain being tricked into following the movements the others were making. My leg tired then, so I left but will go back next week.

I'm also going to Pilates on Friday and do what I can. My physio last week advised me to interact more with people and not allow my gait to be a barrier to things I enjoy. I have come to the conclusion that after all these years of trying to find someone to help me I am the only one who can resolve this as I know my body best. Again, we are all different and will hopefully find our own routes back to where we want to be.

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I remember the OT that retired me suggested that I go dancing. I laughed at him as, at the time, the combination of FND and ME meant that 50 steps was my limit. But there has been remarkable work done with music and Parkinsons paitents and stroke victims too. It seems music has the ability to bypass certain networks in the brain. It is worth a go...

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Indeed.. music does seem to distract my brain too, from focusing on my gait issues and losing control of my left left

.Dance being my main passion, I’ve started a dance fitness dvd at home, by an ex prima ballerina ..Darcy bussell...just 5 mins is enough some days. it’s fun and easy to follow, .it has just 5 mins on each dance style too

Two years after my week with Glenn Nielsen in his 5 day Physio programme.... I still use the techniques I learnt every day, they help me feel more confident to go out on my own....yes I still have flare ups, but I manage them much better than before, on the whole.

Think if more folk can access treatment it’s a great thing, it may work better for some than others, but we all deserve the chance to try it.

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Hi I had this treatment last week under one of Glen’s team. I can only say it was brilliant. I had walked on 2 sticks for 3 years and came out without any. My gait is not normal but they give you the tools and plan to improve it ( this may be something that was not in the early days of the programme) and the tools to deal with the inevitable set backs. They are at pains to not suggest this is a cure but a way of dealing with the condition. I will be reviewed and have been told I am permanently on their books if I ever have problems that I cannot fix myself. I feel there is light at the end of a long tunnel but know there is still lots of hard work to do but look forward to it.

Good luck to all of you in your FND journey.

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physio4FMD NIHR

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