General Chat

Well Mark is still in Carlisle, spent two weeks in Intensive Care and had to have a tracheotomy cos he couldn't breathe but is now back on Neuro-Rehabilitation ward. Spoke to him this evening on the phone [someone held it for him] he sounded very upbeat in spite of everything and is beginning to get some feeling in his upper body but unable to use his hands or arms yet. He is hopeful that in the next few weeks a bed will be found for him in Weston-Super-Mare where he lives - he will have to be transferred by air ambulance or helicopter probably as it would be too far by road, so fingers crossed he'll be back in his own neck of the woods soon and I shall be able to visit him from Cardiff. Thank you all for your input and good wishes by the way.

Ann XXXXX

thanks folks - I feel far more positive since I've spoken to him - he is so brave - no sense of self-pity at all, just sounded as he always does

Ann so sorry your to hear news just googled it, it explains, sorry never heard of it before i wish him a speedy recovery take care.

Joan G

I'll keep my finger crossed for him, xx

My cousin is still in Cumberland Royal Infirmary in Carlisle - Intensive Care at the minute as he has a chest infection - but I actually was able to speak to him tonight - he sounded in fairly good spirits and has some movemnent return to his shoulders and his hands though not in his fingers yet. He is hopefully being transferred back to his home area of Weston Super mare in the next three or four weeks - could be Weston or Frenchay in Bristol Just thought I;d let you know after everyone was so kind in posting encouraging thoughts

Ann XX

thanks Linda - just received it and replied - people have been so kind and the prognosis does appear to be very encouraging - have written to Mark today giving him most of the input I have received in the hope that it will lift his spirits

Ann XXXX

Have forwarded you a message from one of the people I know that has recovered from this condition hope it helps.

Linda x

Yes, actually know of two people that have had this both recovered but a long slow process. Diagnosed fairly quickly which helped.

A Liverpool football player Markus Babel had it around the time one of my friends did maybe three years ago?

Hope Mark improves soon.

Linda x

I shall be collating all this information in my next letter to Mark - every time I go to put a letter together some other kind person comes on the thread and adds something which is fantastic!!! Thank you all so very much

Ann XXXX

Hi Ann
My Grandson who is now 6 years old had Gullian Barre Syndrome when he was 2 years of age.
MY son took him to Doctors on three occasions and he kept telling him it was a virus he had. I told my son and Daughter in Law to take him straight to the hospital as he could not keep his balance.
They admitted him immediately
He was in hospital in Intensive Care for three days before they came up with an answer for us. Finally saying it was Gullian Barre Syndrome. It is very rare and only occurs in one in every 100.0000 people.
Most uncommon in Children. The doctors said she had never had a case of it before in her 30 years as a doctor.

My Grandson was just like a rag doll and could not sit up at all. It affects all the nerves and can cause paralysis.
My Grandson was in Intensive Care for 3 weeks and
in hosptal for a further two weeks then it was a long long process to get him back to what he was before. Lots and Lots of Physio from his parents daily and the outpateints 5 times a week also.
It took almost a year for him to recovery from it.
He was very lucky as it was diagosed early and they said if it had got him in the throat he would have had more problems.
They said he was a fighter and they were surprised he got back to normal in such a short time.
He still has yearly check ups but thank god he is a normal little boy. Runs rings around everyone and full of energy

On the positive side Australia boasts a World Champion Lawn Bowler called Kelvin Kercow He is in his early 40s now and suffered with Gullian Barre Syndrome. He bowls with a walking stick for support. He took up bowling to help recover from Gullian and for exersize
So there is certainly hope. Kelvin is proof of that. He had to have a trachea so I presume he had throat problems
but I know it will be a long process and lots of love and care will be needed from the family.
Ann I wish your cousin all the best and hope for a full recovery
Take Care
Regards
Jackie

thanks Liz - all posts have been quite positive so I am very hopeful Mark will recover in time

I worked with a woman years ago who came down with it while on holiday in France, I think, she was brought home as soon as able to travel and was ill for some time, but then after her recovery was back working as a dinner lady. Haven't seen her for years but am sure she is still around.
Good luck to your cousin, hope he is soon on the mend.
Lizx

OKAY Mary..... you've done it now... you are MAXIMARY to me from now on.

Ann I hope all goes well.
If it is not on ething it's another isn't it?

Deanna X

thanks for all your good wishes and advice - a lot to think about - everyone has been so kind and helpful

Ann XXXX

Hi Ann.

There was a book written years ago called "Bed Number Ten" by Sue Baier. It is a description of her experience with this syndrome. Don't know if it would give some insight into the condition (been a long time since I read it).

when we lived in Lydney (1973-1981), we could see down the Severn to the Old Severn Bridge from our kitchen window. Spectacular when there was a thunderstorm as it always seemed to move up the river.

Ann
glos

thank you Lin - lovely of you to respond - I feel a lot more hopeful for Mark now and shall be writing to him today and will include much of the information I have been given on this thread. People have been so very kind and I very much appreciate it.

Ann XX

sorry only just seen this thread. My f.i.l. had GBS years ago. He got over it ok, as he was diagnosed quickly. It left him with a slight weakness in one shoulder but otherwise he was fine.
Hope your cousin gets well soon and is prepared for lots of physio lol.

Lin x

lol Ann heights dont bother me a jot. But try to get me walk down an open stair case or even worse a windy one!!! I can barely get one foot over the other - I can walk up them fine right to the top .....but down ooooeeehhhh scares me ridged!

Bristol may be a doddle to you Maddie but to me, a Cardiffian, it is a nightmare!!
Cardiff is a doddle to me but you probably would feel the same as I do!!

Colleen - there must be some reason why people like us are drawn to heights yet are petrified of them - same with tube trains as you said, it really is very odd - there must be an explanation. When I was in London last weekend I went up a couple of sets of escalators on the underground and you could look over the side - over a glass barrier - it was as high as about three or four houses!!!! No way could I have fallen over it but my God, how frightening