Intensive residential physio rehab rehab in the uk to improve FND / leg weakness

[TK123]

Does anyone know of any NHS specialist residential rehab units in uk that will take patients diagnosed with FND. My GP has tried local units but it seems their admission criteria all exclude FND. I am very keen to improve my strength (especially as my legs are currently both paralysed) and I am desperate to be able to support myself in daily living tasks and to return to work. No one seems able to help me achieve this or offer any suggestions as to where I can get advice.

[angelite]

Hi TK,

I wonder if it might be a good idea to have a physical  assessment with a private qualified physiotherapist who covers general neurological disorders ? I looked into this and my local one will assess for £ 40. They also do  alternative therapies and counselling , yoga and pilates.

At home, do you have a frame that you can stand safely with for weight bearing practice ?

[andyglasgow2016]

 

Sorry for long reply but it will give you idea on how it all worked for me

I know there is a specialist up here in falkirk Scotland. His name is Dr prempe. I met with him when I was an inpatient for 3 weeks on a standard ward. I received 3 Physio visits to try help my lower paralysis and they held me take two steps then said I can go home! 

When he came to see me, he was the most arrogant man I've ever met. According to him I could get up and walk out of the ward if I wanted to but apparently I "don't want to as I'm waiting on a big payout from insurance due to car accident resulting in my injuries. Also if I went to his ward I would see others with FND and then get ideas how to act and not recover". Lovely guy eh lol 

But he then said there's people on his ward with FND who are there for maybe 2 weeks and with intense Physio they regain full strength and walk out with no issues due to his programme etc. 

So despite his arrogance he seems to do ok lol

I guess he's another nuerologist with his own views but someone who also gets the job done! 

He sent me home and said I would get a Physio visit at home and get the help from them. I waited 8 months for contact from area rehab team.. And the reason the hold up... A physciatrist had to asses me first ... Once again it's in our heads! 

So with my own determination and parents helping me with exercises and leg movements I went from 2 steps on a zimmerframe and parents moving my leg ... To eventually being able to walk with frame on my own... Then to sticks... And that's where I am now

So I would suggest using some device like the giant Physio elastic bands or gym equipment from wilkos etc. Which you stand on and stretch arms but I used it to stretch and lift leg.

Another idea is if your leg isn't moving... Get walking sticks... And the leg lifting device used for lifting it into bed.. Looks like a dog lead with strong coat hanging style material to bend etc.. Attach that to foot and other end to walking stick handle and as u lift stick to walk it will lift up your leg too.  

Hope this helps you any questions feel free to message me

God bless

Andy 

[sunride]

Hi TK123, 

I have just started a course of Neuro physiotherapy  I was referred by my Neurologist.  The only downside  is my physio has little knowledge of FND. 

I have found it really difficult to find any Neuro Physio that actually understand fnd. 

On a positive note I am making progress!! (Baby steps) 

I wish you look in finding a physio. 

                  Best wishes. X

[Lucy-15]

Hi you need to ask to be referred to Prof Mark Edwards. St George's hospital Tooting Bec, London.  He is just starting up a NHS clinic for FND there. 

I was very lucky last month to have 5 days intensive Neuro Physio under him with an amazing Neuro Physio. After nearly 2 years of being immobile at times when been over going it...left leg weakness, muscle spasms, daily pain. I'm now managing to walk without a limp and without my waking stick. It really has changed my life  

Let me know if you need anymore info. 

Hope this helps. Take care. 

[TK123 in reply to Lucy-15]

Hi I have looked online but can find no details of this rehab or the contact details for my GP to refer. Do you still have this info please?

[geordie-girl]

Hi If you live in Scotland Dr J Stone who specialises in FND is based in Edinburgh, I enclose a link to his website.  I tried to see him but does no take patients from England.      fndhope.org/team/dr-jon-stone/  Hope this information helps you, there is also Dr Mark Edwards who is based at the National Neurological Hospital, Queens Square London.  I spent 2 weeks there, but unfortunately it did not help me.  Please keep me informed how you are getting on.  Kind regards Geordie Girl.

[Lucy-15 in reply to geordie-girl]

Hi there - sorry to hear it didn't help you. Just wondering if you saw Glenn Nielsen Neuro Physio like I did in London at Queens square. Of course with this...we all have such different symptoms too. Thanks Jane 

[Lucy-15]

Hi there. The secretary is Jane lynch. For Prof Mark Edwards. 

Tel [phone]. [e-mail]

St George's hospital in Tooting. 

FND specialist neurologist. 

Can you get to London ok ? 

He does private consultations too at queens square consulting rooms  queens squate  London 

Good luck and let me know if you need anything else at all  Jane 

[TK123 in reply to Lucy-15]

Thank you. Situation very desperate as was put against my will in a "planning bed" as told rehab bed would be found. This has not happened and so next week unless something changes - and there does not now seem time it will - I will be made homeless on the streets with wheelchair and catheter. How can society treat any human being like this? Do I have to be homeless and wait until I am critically ill to be re-admitted to a&e in order to be back on some NHS pathway. All I want is to have some intensive rehab in order I can then find somewhere to live and manage independently on my own and then get back to work. But the harder I try for this goal the more I am thwarted in every direction. It is not FND that makes people have suicidal thoughts but the inaction and blocking from other agencies to help someone recover and the consequences that has on someone's ability to be optimistic in the face of imminent disaster to their whole way of life and any hopes for a normal life again.

[Lucy-15]

Oh dear what a horrid time your having ...I presume your in England ? Are you near London ? 

[Lucy-15]

Hi....just thinking if you can you apply for PIP payments to help you out ? Sorry if you've tried this already. I didn't need to in the end, but I've seen on fndhope.org many folk have applied when unable to work. Some more successful than others it seems! 

[TK123]

Hi I'm not near London (but could get there for rehab unit) so think that might be one reason is so hard to find any help for my condition as local rehab units don't seem to see fnd as a clinical or treatable issue. Have not applied for any pip etc as was hoping to soon be back at work. But seem to be being blocked at every turn. And no one can help me. I just feel really helpless and alone.

[Dave_1]

Hi, this situation is not acceptable in this day and age. I think you need more help than just your FND.

Human rights state that you are entitled to a roof over your head. When we have FND just thinking straight is a challenge and we have to get others to fight our corner.

I suggest you contact your local Housing Rights office and definitely the Citizens Advice Bureau.  They will assist you with your PIPS application and put you in contact with possibly a disability support group.  If you cannot do this ask a friend or neighbour or a social worker.

Paying for private appointments can put us in financial hardship that increases the spiral of loss of control.  If you can stabilise your basic living needs then just maybe the desperation you are obviously experiencing will lessen. (I have no idea of your financial position, just talking from personal experience).

Failing all that go to your MP and write to the papers but I think some resolution will be found if you give my suggestions a try.

Depression with FND is so common and I empathise with you totally.  It will make you feel helpless but it may surprise you that there are caring people left who are prepared to go the extra mile to give you a leg up.

I wish you a change of fortune and the sooner the better

[Missclc]

I as in the neuro u it in Bristol the rosa burden centre in Dec 2014 , I was in a wheel chair and spent ten days in there, pure monitoring a lot of intense therapy and came out feeling more positive and could walk.

I then started talking therapy in June last year and it helped my seizures as was having up to six a day thro stress , these have niw stopped and my walking been good , sometimes have to use stick but can deal with this.

However boooooom my illness has come back with a vengeance Somitisation kicked in massively the last two weeks had a lovely holiday in canaries and then came home feeling very weak and unwell and now bed bound again . So horrid as it proves always ther and never know my neurologist even signed me off and said I can have a six month open apt looks like o be on my way bk if not hospital admission at this rate . But try the the rosa burden centre

Keep in touch 

[BuntyP]

Hi, I found using a tens machine with the pads on my thighs reminded my brain to talk to them. It took me from unable to stand to able to walk whilst using the tens stimulation and now I am able to walk without using the tens machine. It will definitely be worth a try. My tens machine is from Nidd Valley, and I bought it online. You need one that will work continuously. Good luck.