Positive progress

[Cookiecc67]

Hi I just wanted to share some positive news and hopefully give some of you hope.

I have had FND for 3 years. I walked on sticks for 2 and half years or used a chair. I was seen by Professor Edwards last June and he confirmed my diagnosis and put me on the waiting list for physio as an in patient. I went into St George’s 2 weeks ago and came out of the hospital walking without sticks. My gait is not normal and I know there will be set backs but my walking distance and stamina improves daily. I am not cured and know I will always have the propensity to struggle to walk but there is light at the end of the tunnel and I am far more optimistic. I have more insight into this condition and the tools to cope. I hope you can all find the support and treatment you need and wish you luck with this horrible problem.

[shirleysgirl2016]

Great news!!!! Wishing you lots of positivity in your journey!!

[Bagi]

What kind of exercise did you do there can you share?In my country there is no this kind of exercises

Is there any private practices or therapist who accept foreign patients?

[Cookiecc67 in reply to Bagi]

Hi hard to describe but essentially they break your walking Zdown to its component parts and rebuild it. I am not aware of any private practice doing this. You could try contacting OrofcEdwards team at St George’s London to see if one of their physios could talk to a physio where you are. Good luck.

[Bagi]

I did, but they don't except patients outside of UK. I am desperate for any help. If you could write more about how they helped you and what I could try to help myself I would be more then grateful.

[Cookiecc67]

I am really sorry Bagi but is too difficult for me to describe in words. There is a lot of explanation of FND and then intensive physio on a 121 basis. It is specialised and not something I can easily explain. If you have a physio or Dr supporting you perhaps they could contact St George’s for advice on how it works as I do not want to describe something badly and make things worse as I am not a health professional

[DNE92 Moderator FND Hope UK]

Excellent news. Cheers Lou

[Dot50]

Hi, really pleased to hear you are continuing to improve! I saw Prof Edwards last September and he recommended the intensive programme for me, but said the waiting list was 12 to 18 months! How long did you have to wait from your appointment to treatment?

Keep up the good work!

Dot

[Dot50]

Just re-read your post and I see you waited from June last year to February, I was told last September 12-18 months. I wonder if I'll have to wait longer as I'm in Wales, and they have a separate waiting list for people outside England. It will be wonderful if I don't have to wait much longer!

[Cookiecc67 in reply to Dot50]

Hi I was lucky enough to be offered an cancellation but was initially told 12 months. Always worth giving them a ring once you have been on the list for 6 months to see how it is going. Good luck