The Wolfson neurorehabilitation unit - FND
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hdeakin
Scope Member Posts: 126 Pioneering
Hello,
I recently came out of The wolfson unit, for neurorehabilitation at Queen Mary’s Hospital, Roehampton. @Adrian_Scope and @Ami2301 you said to let you know how I got on and I thought others might be interested whom it could help. There is a great programme for Functional neurological disorder (FND) patients, it may also be of interest to MS and stroke patients or relatives.
I have written a blog post about my experience if you would like to know more:
https://hannahdeakin.blogspot.com/2019/07/my-stay-at-wolfson-unit.html?m=1
It is definitely a great place.
Hannah x
I recently came out of The wolfson unit, for neurorehabilitation at Queen Mary’s Hospital, Roehampton. @Adrian_Scope and @Ami2301 you said to let you know how I got on and I thought others might be interested whom it could help. There is a great programme for Functional neurological disorder (FND) patients, it may also be of interest to MS and stroke patients or relatives.
I have written a blog post about my experience if you would like to know more:
https://hannahdeakin.blogspot.com/2019/07/my-stay-at-wolfson-unit.html?m=1
It is definitely a great place.
Hannah x
Comments
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Great blog @hdeakin. Thanks for sharing and I'm glad it's had such a positive impact on you.Community Manager
Scope -
Thank you for sharing this @hdeakinand I am so glad that this has helped you. I have recently been diagnosed with FND, albeit with other unexplained symptoms alongside it. I will ask my GP if this is something that could help me too.
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Thank you @Adrian_Scope . I hope it can help others too ?
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Hi @underdiagnosed yes definitely ask your GP about it and whether it will help you. I don't know who you are under but Proff Edwards at st George's is great with movement disorders and FND. Good luck ?
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Hi @hdeakin, thank you for taking the time to share this with us! I'm so glad to hear you found it beneficial during your time there and that you still got to come home at weekends!
Scope -
Hi @hdeakin
Just read your blog, what a great journey you have been on and good on you for making such progress.
It was good to learn that stroke patients also take part, as I was involved in clinical research with the Stroke Association, which concluded there was not enough rehab, post stroke.
Are you thinking of doing a follow up, to see how you are getting on?
Would be of great interest to us all.
Best wishes
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Thank you @Chloe_Scope You are very welcome. I hope it can help others ?
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I love your blog @hdeakin. So inspiring to read!
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Thank you @atlas46. Yes definitely, I don't think there is enough rehab available for any illness. Which is such a shame as it could make such a big difference. What do you mean? A follow up blog post on how I am getting on? Best wishes ?
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Thank you so much @April2018mom . I have a Facebook page if you are interested Facebook.com/hannahshopeuk ?
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Hi @hdeakin
By way of follow up blog.
Most rehab programmes, have a follow up session to assess how you are doing, usually three months after the programme.
Think it would be welcomed by the community.
Check with the Wolfson unit, if they do this.
Thanks
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Hi Hannah...I found your write up of your time at The Wolfson Unit so interesting! You are a lovely person.
I may be given a chance to improve my condition in the not too distant future.
I`ve been advised by The Walton Centre for Neuroscience, in Liverpool, to ask for a referral to them by my GP.
I darent hold out too much hope, as I am 66 and been disabled for 20 years. I am a full time wheelchair user, and need a lot of help in my daily life.
I am undaignosed, after 2 wrong diagnoses, so it would be good if that was all I could achieve....knowing why I cant walk!
Best wishes to you Hannah xx -
Hi @pollyanna1052 thank you for your kind words I am glad you found it an interesting read. That would be great if you are given the chance to try improve your condition in the future and get a diagnosis. A referral to the Walton, Liverpool or the wolfson unit? Sorry I got slightly confused! Either way both places are centres of excellence. I know at the Wolfson unit there were many people around your age as well as older and younger, so I don't think that would reduce your chances of getting in there. I wish you all the very best and please ask if there is anything else I can help with x
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Hi @atlas46, I had a review at 6 weeks which they were pleased with my progress and the fact that I had managed to maintain all the gains I had made in rehab plus gain more. The rate I am progressing since I left the Wolfson unit at the end of June is a lot slower, but I suppose you would expect that. I finally got my 4 wheeled walker at the beginning of September which I find a lot better than the zimmer frame. I am trying to use it twice a day. Slow and steady wins the race! ? I participated in the Superhero tri in August with the lovely @Ami2301 where I was thrilled to walk to last few steps over the finish line with a zimmer frame and support a fantastic achievement for me and Ami. ? Here is the link if you would like to read about it: http://hannahdeakin.blogspot.com/2019/08/superhero-tri-19-team-hannah.html?m=1
I have also written about FND if anyone would like to read or learn more about it @underdiagnosed this maybe interesting to you: http://hannahdeakin.blogspot.com/2019/08/what-is-fnd.html?m=1 ? -
got my appointment at The Walton in Liverpool....6th nov x
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@pollyanna1052 I wish you the best of luck for your appointment at the Walton. I have my fingers crossed for you x
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Thanks for updating us @hdeakin. It's always good to hear from you and I'm glad to hear you're still making progress!Community Manager
Scope -
Thank you @Adrian_Scope?
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My appointment at The Walton has been changed to 19th Nov. x
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