Karen Posted January 16, 2009 Author Share Posted January 16, 2009 Hi Perry, It is difficult to find the hours in the day sometimes ..... but getting the Moderators onboard, will hopefully free up some time for me ..... plus, as the website has got busier (and behind the scenes) I know that I need to put things in order and get a good network of people behind me ... I know, that when the day comes, if I can't run the website, then it will be easier for somebody to take over. I know what you mean though Perry, with being tied to the computer .... Can't believe that you're nearly 70! ..... There's nothing wrong with your brain cells Perry and they definetly do communicate! Hope that I shall be the same God willing! Take care and keep well, Love K xx Quote Link to comment Share on other sites More sharing options...
tennissmithy Posted January 16, 2009 Share Posted January 16, 2009 Hi all, I work for an education research company as well that i'm sure would be willing to give me guidance on questionnaires etc. I am willing to help in whatever way we can think of, we need to keep batting the ideas around and come out with plans that we as a group carry out. We really need to raise awareness especially since we have not been helped by programmes like emmerdale like have shown recovery within days rather than months/years. Lets stick together and get action Love and hugs Laura xx Quote Link to comment Share on other sites More sharing options...
Guest yasmin Posted January 16, 2009 Share Posted January 16, 2009 Hi guys thought you ought to look at the following web site I only found it by chance, if you are trying to raise awareness this might give you some ideas? not promoting other sites Karen (you know I would'nt do that) but if members are going to do something its important not to duplicate whats already out there Yasmin xxxxxx www.neural.org.uk Quote Link to comment Share on other sites More sharing options...
perrycornish Posted January 16, 2009 Share Posted January 16, 2009 Hello Yasmin, I popped along to have a look and basically it would seem to me to be an organisation we could at least co-operate with Scott, they have some downloadable leaflets etc, might be good pointers, as long as we are not guilty of plagiarism They seem to be focused on awarenesss but of a very broad range of neurological conditions, I imagine we are looking to be specific about SAH ? Scott, do you know any health professionals who might be able to come aboard. We don't have any specialised units here in Northern Ireland and our health service is structured differently so my knowledge of the 'backrooms' is limited. Quote Link to comment Share on other sites More sharing options...
tennissmithy Posted January 16, 2009 Share Posted January 16, 2009 Hi all, I've just had a look too, it would give us some pointers as a starting point. We are an extremely clever bunch and we will do this! Laura xx Quote Link to comment Share on other sites More sharing options...
Sasbo Posted January 17, 2009 Share Posted January 17, 2009 What about approaching someone like the Lloyds Pharmacy chain for support? They always seem very big on awareness campaigns and have their own radio station too, which plays out in all the shops. Just a thought..... Sarah x Quote Link to comment Share on other sites More sharing options...
Lauren D Posted January 25, 2009 Share Posted January 25, 2009 Hi All Some great ideas are coming across here and I feel really enthusiastic. The FAST campaign looks like a no-brainer (pardon the pun) for SAHers and I've heard nothing back from them. I spoke with the BSF briefly at the Emirates do and they reckon there are some 25.000 subarachnoids per annum and most people end up in the mortuary and are not even accounted for. They are turning their attention more towards SAH and are working closely with the DoH so I am waiting to hear how they will be redesigning their image as they have people who are working on it right now for this very reason. We do need to make ourselves heard, firstly from the diagnostic front and secondly from the recovery issue and that it's not a quick fix which seems to be the general perception, coiled and out and back to normal ... one of the girls at the tennis club has had one this last week and I noticed the perception is that the op has been done so it will all be all right in a few weeks and I feel so sorry for anyone setting out on this course as it's such a difficult one. I take every opportunity I can to publicise the cause and I'm not sure another charity is the right way forward. I think that BTG is wonderful and by turning it into a charity might spoil the work that Karen has done and change the direction because by having a place where we can talk is wonderful. If my opinion offends anyone, just say, I'm just expressing my feelings. Bless you all. Lauren x Quote Link to comment Share on other sites More sharing options...
Guest rachelwells Posted January 26, 2009 Share Posted January 26, 2009 Hi All, Just been reading the posts about raising awareness of stroke and FAST, I think you are all right, This leaves too much room for error... Jon had a haemorrhage and it wasnt until 15 years later i found out it was a form of stroke.. Im really not trying to be rude here to our elders, but before Jon had his I thought it was elderly people that had strokes not the young but as we all know this is not the case. Ive been thinking....(tell me if I being stupid here, or living in a dream world!) Anita Roddick died of a Haemorrhage (ten days after my brother's Haemorrhage) she was a lady who loved to campaign for what she believed in, The Body Shop Foundation How about I/WE/Someone speaks to them, regarding raising awareness, after all their founder died of the very condition we all have been so affected by. Hope you are all well. RachelX Quote Link to comment Share on other sites More sharing options...
Guest rachelwells Posted January 26, 2009 Share Posted January 26, 2009 Hi All, Im on a bit of a roll tonight!! what about Iceland's/Tesco/Asda/Sainsbury Milk Cartons? As a last resort Im willing to run down Oxford Street with no clothes on for the cause!! (maybe not!) It's just so frustrating knowing this can happen to anyone and yet you dont know about it usually until it happen's or directly affects you. I know all conditions/illnesses are worthy of the campaigning, but the thing is with haemorrhages is they cause the damage and you can't get back. Ive been reading the book Head Injury by Trevor Powell and it refers to the brain as the "silent System" none of us can do without! Rachelx Quote Link to comment Share on other sites More sharing options...
Lauren D Posted January 26, 2009 Share Posted January 26, 2009 Hi Rachel The Roddicks sold out to L'Oreal in the end. However what a good idea to think of them. Carol Barnes died of one last year and it does seem to be hitting much younger people. I read somewhere that it gets 10 years younger with each generation where it's a genetic factor. Just look at all of us young 'uns on here! Girl at club is only early 40s' so there's another instance. We do need a Sub-Arachnoid Awareness campaign. Lauren Quote Link to comment Share on other sites More sharing options...
Guest rachelwells Posted January 26, 2009 Share Posted January 26, 2009 Hi Lauren, The body Shop International Ltd was sold to Loreal, but The Body Shop Foundation is still operational, Anita Roddick left her 51 Million pound fortune to it. (charitable trust fund) they have a section on their website for funding applications for this type of thing. Do you think it's worth a go? Thanks Lauren Rachel Quote Link to comment Share on other sites More sharing options...
perrycornish Posted January 27, 2009 Share Posted January 27, 2009 Hello Rachel For what it is worth, my opinion is 'what a very good idea' to approach the fund set up by Anita Roddick and I suspect that others may also be pretty enthusiastic. We have had some pretty good ideas thrown into the pot in this thread, now we need someone (like Scott) to collate it all into a cohesive document. Scott, now would I ever drop hints like that one ? Karen is I reckon already pretty much weighed down as is Keith, so maybe we should not ask them to do the leg work, but you more or less volunteered Scott , My staff used to tell me my hearing was too good for words too, and that I also imagined that folk had volunteered, now I'm retired Scott so you will do!! I say 'for what it is worth re my opinion as there are many folk who have been members of this board far longer that me, I might have a reputation for 'coming across' volunteers, but I do try to avoid stomping on people's feelings Quote Link to comment Share on other sites More sharing options...
Karen Posted January 27, 2009 Author Share Posted January 27, 2009 Hi All, I'm still reading this topic with great interest, even though I haven't replied ..... Lauren, at this moment in time, I won't be taking BTG down the charitable route .... It may be something that I have to consider at a future date who knows, but it's quite nice to keep BTG independent and keep developing ideas as to how we improve the website and information on it. Rachel, The Body Shop Foundation is an interesting thought ..... Perry, you're right ..... at the minute, I haven't personally got the time, as I'm working on something else and I can't juggle all of the balls .... K x Quote Link to comment Share on other sites More sharing options...
Lauren D Posted January 29, 2009 Share Posted January 29, 2009 Hi all Am at work so cannot respond properly but will get back to you. All brill ideas. What about the Brain and Spine Foundation - would you like me to find out a bit more about their plans for promoting SAH in the future as I know they have this work in hand? Also a friend at tennis club 43 has just had one and is in Kings coiled last thursday - spoke to her yesterday and she's recovering well still in HDU and like most people had only thought this sort of thing happened to "older" people. Lauren Quote Link to comment Share on other sites More sharing options...
tennissmithy Posted February 1, 2009 Share Posted February 1, 2009 Hi all, Slightly changing the subject but not really...... On Wednesday evening both Simon and I did an interview for the BBC for about 2 hours! They interviewed Simon from 5p.m. until 5:40 ish from the carers perspective on looking after something who had had an SAH. They then interviewed me and videoed me telling the story of my SAH and the recovery ( not like Emmerdale etc) and about how fab my family and BTG have been. Simon sent the BBC an email 3-4 months ago saying how BTG had kept me sane and given me a fantastic support network. The BBC researcher had then had a look round the site and thought it was excellent so rang Simon to ask to meet. I nearly ran a mile when I got to Simon's work and I could see her interviewing Simon with a video camera on him but with the help of Sami (Skippy) and my sister (Clare) I stayed put and thought I could be strong we need SAH and BTG promoting! They plan on putting it on file and getting it out if they decide to do more work coming up to Brain injury week/ stroke week etc. She says if and when they do she will reinterview me and Simon and get in touch with Karen about BTG. By the way yes, I cried through lots of the interview! Especially when saying about the 'dreaded week', the loss of good friends supposedly and then silly I know but the love and support that you lot all offer me. I owe so much to my dear friends on here and that is reported in my tape recording especially the people who I have met because it was so good to know we all were the same. Anyway will let you know more when I know more- aren't I a brave soldier!! We only left to go and the football which kicked off at 7:45- we lost- I should have stopped at the interview!!!! Love and hugs Laura xx Quote Link to comment Share on other sites More sharing options...
paul99 Posted February 1, 2009 Share Posted February 1, 2009 well done both of you i hope it all turns out well for you it does need to be brought into focus and yes you are brave to recollect what happened and your entitled to cry it shows you care hugs and cuddles to you both Quote Link to comment Share on other sites More sharing options...
Tina Posted February 2, 2009 Share Posted February 2, 2009 Laura, well done to you both...i can just imagine how emotional it was for you....lots of love to you, love Tina xx Quote Link to comment Share on other sites More sharing options...
Guest Beth1957 Posted February 2, 2009 Share Posted February 2, 2009 Oh well done, Laura & Simon!!! (and Sami & Clare for being there to support you) xxx Quote Link to comment Share on other sites More sharing options...
Janet Posted February 2, 2009 Share Posted February 2, 2009 Well done Laura and Simon and I imagine it was very stressful and quite emotional. Here's hoping that it gets shown as well. Janet x Quote Link to comment Share on other sites More sharing options...
michelle C Posted February 2, 2009 Share Posted February 2, 2009 Hi Laura What a brave soldier you are, i am not suprised that you cried i bet we all would, very emotional to say the least well done you two, i am so impressed sending love and hugs. Love luck and laughter Michellexxxxxxxxxxxxxxxxxxxxxxxx Quote Link to comment Share on other sites More sharing options...
jess Posted February 2, 2009 Share Posted February 2, 2009 Well done Laura and Simon. I am also onto it with tescos and some kind of advertising sah will let you know how I get on. Jess.xxx Quote Link to comment Share on other sites More sharing options...
perrycornish Posted February 3, 2009 Share Posted February 3, 2009 Brilliant Laura and Simon what an opportunity, and taken which maybe some of us would not feel able to do Let us all hope that the BBC do indeed want to use the material, we must all get our brains back into gear so that we can be there if more support is needed, I feel that we all owe Laura and Simon a big cheer, and indeed a Thank you for this which could be a very big and positive step towards raising awareness Good for morale for all the team too, I bet! Quote Link to comment Share on other sites More sharing options...
Karen Posted February 9, 2009 Author Share Posted February 9, 2009 I've just seen the first of the FAST ads ..... just watching the news and they are pointing out that a stroke can be a clot or a bleed ..... which is good .... but they should have put this info on the ad also ..... the government or the ad agency working for the NHS, should have done their homework a lot better ... You can see from this website, that the vast majority, don't realise that a bleed on the brain is a stroke ..... and associate a stroke with a clot only ..... Quote Link to comment Share on other sites More sharing options...
Skippy Posted February 10, 2009 Share Posted February 10, 2009 Hey there We saw that advert last night. Paul couldn't watch it - he said it was like reliving the whole thing all over again, bless him. But yeah I think people need to know that Strokes can be caused by bleeds as well as clots. TTFN Sami xxx Quote Link to comment Share on other sites More sharing options...
paulg Posted February 10, 2009 Share Posted February 10, 2009 yes i saw that program too ,brought back me also bad memories tc paul Quote Link to comment Share on other sites More sharing options...
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