General Chat

Does anyone on here have any experience of this illness please? My cousin is currently in hospital paralysed from the neck down having been diagnosed with this illness. He was on holiday in the Lake District about a month ago, was taken ill, taken to Whitehaven hospital and transferred to Cumbrian Royal Infirmary in Carlisle, where he is at the moment. I know it is a neurological disease and apparently Tony Benn had it once. Poor Mark actually lives in Weston-Super-Mare and they are hopeful of transferring hime back to that area in a month or so, but I just wondered if anyone on here has come across this awful thing before

Ann so sorry to hear of your news. I am sad to say I havent heard of it before.

thanks Maddie - can't visit him even cos it's just too far away from Cardiff. Googled the sydrome and there's lots of stuff on it but it's all so clinical on there, wanted to know if anyone had actually come across it personally

Yes I have, my previous employer, an orthopaedic surgeon, had a niece diagnosed with it about 20 years ago, the key is quick diagnosis and treatment. His relative survived and had done very well,last I heard. Good luck.

well that sounds hopeful - thanks so much for that

thanks Julie - if he is sent to Bristol I should be abled to get there to see him, although Bristol frightens the wits out of me traffic wise!!

Ann....this is one illness I have never come across, thank goodness..

I wish your cousin a favourable diagnosis and hope he can be transferred closer to home very soon....

My regards to his family


JoyceP

thanks Joyce - he has very little family - he's a bachelor coming up to retirement - an absolutely lovely guy. His brother and sister-in-law live in Edinburgh and they have managed to get to see him a number of times but there really is no other family - at least if he is nearer home he has lots of friends and work colleagues to visit and help keep his spirits up - just off to type him a letter again!! He is such a sweetie and he must be so depressed

Have you googled for this as there is quite a bit of info about it.

hope your cousin gets transferred asap to be nearer his family.

Sue

Hi Ann

Hope your cousin gets better soon.

Please google www.nhs.uk
Choices
click hospital box
enter Frenchay or what ever hospital your cousin may or may not be transferred to and this will give you the website and all the information you need to get to the hospital.

Best of luck
Tina xxx

I cared for someone with this a long time ago.. she was recovering, although her recovery was very slow. She did eventually make an almost 100% recovery (I had left the job by then, but used to see her every so often) although last time I saw her she said that she still had some weakness in her one leg... if she got very tired or had an infection of any sort, her symptoms got worse... don't know how she is now as I haven't seen her for a while.

If your cousin gets transferred to Bristol, I'll take you to visit him if you want... just ask, ok?

I hope he is feeling better soon.

Love

Daff xxx

Barbara Windsor had this I believe a couple of years ago. I think it strikes after a virus. I am sure if they have caught it in time he will recover from it, although it may take a while. Lots of thoughts for him that he will get better soon.

ann
Glos

thanks for that Tina - just the thought of driving anywhere in Bristol sends me in a flat spin!!! I'll end up in the next bed!!

Ann if he goes to the BRI - I would be happy to drive you through town xx Im your side of Bristol as you come in not too far from the airport.

go on the nhs website they speak plainer english than a lot of sites is stuff on it there.

Mum has a similar condition can never remember what it is but its a rare condition something like cidph.

at least he is in the right place and can get treatment not nice watcing people with nerve conditions suffering.

There you go Ann, lots of advice and offers of lifts. Unfortunately I do not drive otherwise I too would be offering you a lift.

good luck
Tina xxx

you're all absolutely wonderful - really you are!! thanks Daff and Maddie Moo for the offer of lifts - so much appreciated - I knew if I posted on here I'd get responses but quite frankly I'm quite overwhelmed - and all this after Wales winning the rugby yesterday!!!!!!

Just PM me if he does come down. I work full time but not far from the BRI I am very lucky in my job and am sure I could shuffle some time around to drop you off and pick you up..... from just outside Bristol - I couldnt drive to wales and back on a weekday.

what can I say? so much help offered - just brilliant!!!

((( Hugs)))

Lindy xx