Therapy anyone had it ??

[123lisa]

Hi guys im going on an 8 week therapy course in london has anyone done it ?

If so how was it and did you feel any better ??

[malalatete]

What is the course and where in London is it? Who is running it? I did a course at the NHNN in London but it was only 1 week. It helped a bit but not much. My improvement has had nothing to do with doctors.....

[123lisa in reply to malalatete]

Its in Bethlam hospitial its FiND programme

[malalatete in reply to 123lisa]

I was seen under Dr Mark Edwards (as he was then), an intensive physio programme for FND of gait. My steps per minute increased from 19 to 26 but the advice given was that if I couldn't walk properly I should not do so (use my mobility scooter instead when my legs were misbehaving), and that I was to rest and pace activity.

It was pretty standard advice, really, and I think that the improvement that they had hoped for didn't happen in hospital and they were rather at a loss as to why. Further tests which were meant to happen didn't, and so I left with a sort of an action plan, but it didn't really help that much, if I am honest.

My FND has disappeared of its own accord twice - once for 18 weeks in 2013, and more recently since last March (give or take half a dozen mini episodes, none of which have lasted more than about a week). I don't think I have been doing anything differently; I don't think I've been any less stressed or emotional than at any time over the last 7 years (rather the opposite, given that I had brain surgery last July); I think that what happens is there's some faulty 'wiring' - obviously not structural wiring, or they'd be able to see it, but neuro-chemical or neuro-electrical system that has a bit of a trip-switch, and something (although God only knows what) triggers it every now and then. I am relieved to be much better at present, able to walk and to do lots of other things too without the disabling neurological, cognitive and fatigue symptoms, but unfortunately I can't attribute any of that to any of the medical care I've received....

Good luck with your rehab programme though, I hope that they do find something to 'reset' your systems.

Best wishes

[Leesaloo]

Hi, I am going on a four week course at gt ormond street at the end of November. They did tell me at my assessment to be realistic about what they can help me with. I have heard they have had good results but that is all I know. When do you go in. ???

[Cmsaf]

Hi I am going to bethlam hospital in January for 12 weeks. Went to look at it last week. Are you in there yet? What's it like?