perrycornish

Angie, welcome from another doglover! We have two at the moment, and yes they are great motivators and great comforters, I imagine that you will guess from my username that I may have some connection with Cornwall, I do indeed, I was brought up there ( am now very much a senior citizen) but love Cornwall always Here in NI is the closest I have been to somewhere like it, our coast is very similar. It seems to have taken me rather a while to find your post, I'm sorry about that, but wish you all the best anyway

Hi Deborah and welcome Yopu have had a rough time, but now the time has come to look after you! You are important and the only one who can really know just how you are feeling. What you have said so far sounds about right as I am sure you will discover the more you explore the site. There will always be someone to answer any questions you may have, no ! will have, we all do Take your time, and be good to yourself as well as to your family, they need you too! I look forward to any more posts you may make

Hello Steve Poor you and of course your wife, there is no need at all for her to worry, as others have said she is just experiencing the things which are 'normal' for those of us with SAH. I too was in our local general hospital after being discharged from the neuro-surgical unit. There will I am certain be no question of transfer to a mental hospital, but I can understand your wife's fears, it does seem as though one is losing one's senses, but I promise, this is not the case! The easiest way to look at it is that they ( her senses) are taking a break, they have had a battering and now need to recuperate, that is simplistic and not in the least a medical opinion, but I bet there is no-one who has had an SAH who would disagree with me, and maybe we are the experts It takes time to improve, and there is no real way of estimating the time , it is more a case of 'how long is a piece of string', but please go to her and tell her she is as normal as all the rest of us and not at all in danger of any mental health problem. Thinking of you all

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!

Apologies from me too, I simply did not see this thread, so sorry Immediately after my discharge from hospital i too could have slept for my country, now I still go to bed and to sleep much earlier than before the SAH but not quite as dramatically. I am almost on normal sleep levels for about a week then bam back comes the need to sleep more. Before the SAH I was a chronic insomniac. I do dream a great deal both before and now, but now they continue even if i have been woken up, they are rather disturbing and disruptive dreams, leaving me quite anxious when I awake, this would not have been the case prior the SAH, I'm looking forward to some improvements Edit; So sorry about the typos, brain asleep already

Here you are Karen The info is around somewhere, but just to make your life a teeny bit easier......... I was 67 when I had the haemorrhage. Was coiled. Right side cerebral artery the victim, and despite my name I am female P.S. at edit when my brain fished out the info I also had a shunt!

Hiya Vaughan, Sorry, here I am again, as my grandmother used to say, 'all behind like the cow's tail Welcome to our family, all of us need and can also give support and understanding in big doses. I'll have to turn down your invitation for coffee and that drink! I'm a tad too far away! I used to live in Hampshire ( Petersfield and Buriton, to be precise, and also used to shoot through Waterloo each day on my way to earn a crust Hope to get to know you better 'ere long.

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

Great news Joanne, now just concentrate on you

Joanne, You are right, you are not ready to go back yet, no-one with a brain injury could be ! Tell them what you told us about your benefits of being at home, not quite the same as work is it. Two months would be ridiculously early, tell your Occ. Health nurse to look on this website, if she thinks you are OK!! Don't hold back to be polite! Tell it like it is and then turn back to us for support, you will certainly get it

Congratulations, Lucie and have a really good day

Hmmm! Doesn't this discussion just illustrate exactly the point made by Scott some time ago. We really need some consistency in the info

I agree with Scott on this, I never was required to surrender my driving licence, in fact when I rang my DVLA ( we have a separate one here, although we are still in the UK!) they could offer me no advice. I did not drive for just over six months as I knew I was not fit to do so, not I think something which can necessarily be left to the discretion of individuals ( I always felt, that I might have made the decision to give it a go had I still been working. I also feel led by us Yes, Scott but if we wish to have the costs covered and any resulting literature issued to patients we need to involve health professionals in the production. They are as a profession and understandably, a bit precious about who does what and almost certainly would not give to all patients if it is purely privately produced. I also feel that we ned to have something to be given to all patients, when they are discharged and disseminated throughout the various health services. We cannot rely on a web prescence, sadly coverage of computer possession and skills is far from 100%

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.

Scott, it looks as though we ( with you at the grindstone end) could be headed for a mini lift off, after all the donkey work comes in the finding out things Karen, you are so right about setting up as a charity being an awful lot of hard work and red tape. Also charities like Heart and Stroke, Headway etc, have their own major concerns and quite rightly would want to target their own specifics! My vote is still with independence, as we then will have one goal, the raising of awareness and outcomes in SAH. The very thing which Scott has pointed out, quite rightly,that is what is missing to date, on that I think we all agree. Not necessarily as a criticism of how we fared as individuals, but more about the wide variations in care and recognition that are so obvious as we read through various experiences.Karen, Keith and Chris all have enough to do , don't I know it, I have just passed on my website to someone else, and boy am I relieved.No more am I actually tied to my computer ( know the feeling Karen? ) Scott has said he is willing as have others I too would not go back to work ( at least it is pretty unlikely, I'll be 70 soon but I still have a brain cell or two which actually communicate with the other ones ! I am sure that everyone agrees we need a cohesive, united front though and something half way coherent to give to possible funders. Tough Roads ahead! But then we all know what a tough road is like I agree Yasmin that if as you are in Market Research, your organisation could play an important early part in finding the levels of awareness which would be very valuable! Scott I too am quite happy to work with large organisations, it won't be a first for me and to an extent I do know how they tick. Karen it looks as though there is a great deal of willingness, so you should be able to sit back and just throw in the odd comment and maybe keep all the team on track lol Karen, you posted at the same time as my poor elderly brain was plodding along! I agree with you, but reckon you need to let others do the donkey work, you have enough on your plate!

Karen, Lauren, Laura and all, I have been pondering quite a lot this week and had oddly enough today, come to the conclusion that we should not even try to push too hard to be included in the FAST campaign, but that we should as a group of survivors, raise awareness ourselves of 'how it really is' we could approach a drug company ( don't hit me!) to sponsor a well written and good looking leaflet/booklet. In fact most drug companies would I know prefer to be involved at the start of something ( they do not like to be asked to be involved at perhaps the half way mark, I say the drug companies as that is most certainly where the money is! I was, for a short period of my working life, a practice Manager in a large general practice, ( short because it was not my cup of tea if I am honest and they ( the drug companies) were more than willing to spend if it got their name up front! So evidence put together by us as a result of questionnaires, devised by us perhaps ? Is that an idea worth persuing so that our opinions are right up there and included in any booklet which would in turn be issued ( through hospitals etc. to patients and their carers on discharge. A lot of ideas have come forward and who else but us has the experience. As Scott said some time ago, we are now thre 50% who do survive and now need to educate the health professionals. Those are my thoughts to date, what do we all think, especially Scott and Karen ? I will not take hump if you tell me to wise up, I just am not that sort of person. If you think I'm rambling tell me and I will try to clarify!! Let's give it to 'em strongly!

Scott, Karen and all, Yep! Count me in too. I am (since I saw your post Scott) trying to collect my thoughts and my experiences into a coherent whole, but as I'm still battling with the aftercare I keep coming across great big new gaps in the care package, if it is worthy of the name, at this early-ish stage. I will forward my thoughts for what they are worth at a later date when you are ready for them. I think the info needs to be across the board, medically speaking, as there seem to be so many regional variations. Me still being here to rant like this is actually down to three folk, my partner and the ambulance man, plus a new but on the ball Houseman, who recognised what he was seeing ( then a cracking good surgical team,) we became quite intimate after three dates in theatre

I agree re medics not listening properly but also reckon that LizBeth has made a very valid point. So often I think many signs are treated as being caused by different illnesses, like LizBeth's arm, her loss of memory etc etc were treated as separate things when there is a definite maybe that they were the leaks the neuroradiologist saw! I had been a tad on the sickly side with various 'other illnesses' all of which were treated with enough pills and potions to make me lose my appetite! Oddly enough since my SAH they have vanished........now there's an odd thing! ( Sorry that was a bit sarcastic, but it makes me feel like that! I too had lost a great deal of weight as I seem to remember someone else mentioning (?) elsewhere, for no apparent reason, but I often wonder was it just caused by a general malaise whilst that old annie brewed! Mind you, I'm still pretty skinny nearly a year on, ( Hurrah!) from having been what I think North Country folk call 'a gradely lass! I digress, but want to note for Karen and anyone else who cares,that I'm off for an Angio very soon, no date set yet :?

Hello there I'm so pleased that things are starting to work out for you all, I hope that Christmas will be the best it can be and that the good news continues for you ,please do keep in touch, mutual support is a great healer as you have already found, we will all still be here

Hello again, Michelle I've been having a 'think'......got to go and rest now lol and I reckon that if Karen, Tina, and You and I met up for a grand stick walk, we could beat the world I wasn't given a walking stick when I came out of hospital Michelle, I'm arthritic and pushing it age wise so I had one anyway No extra costs, great

Hello Michelle, hopet he physio is helping, I too am having physio from the dedicated brain injury team we have I really just wanted to say, 'have that stick', I do, not only does it help with balance problems, but it also makes most people step aside to give you free passage and that is brilliant!

Me too! I used to be the person to whom everyone else came to have their various machines etc explained to them, now I puzzle over something probably very easy, for ages and yes it is so frustrating I too keep notes,my own interpretation of what to do, as I cannot easily follow the manuals I have had to learn to swallow my pride and ask too! Not easy, but I suppose a good life lesson :?

Hello and welcome Ganavan, like all the other posters so far, I do struggle with my memory and have to walk around with a notebook in case I have a good idea as I won't remember it, I too cannot remember much about my time in hospital and still nothing about what happened, for which I am grateful. I do remember people but only if I see them not just by recall, I too am in the 'early days' category, it is eight months since I had my SAH. I think it is safe to say that most survivors have memory problems, but they do vary very much no two people are the same although there may be similarities like the ability to burn everything 'cos you forgot it was on! I have very little recall of things technical, had to more or less re-teach myself basic computer skills,I used to tinker with my computers innards, and setting and would happily install hard disk and memory, now I wish that I could install memory for myself but I can't even think about how to do it for my computer, very irritating! I try never to think anything is as good as it gets, as so many people have found that even years down the line they have got back a skill they thought lost forever! I had to look back several times whilst writing this post to check who you were and who said what, how's that for short term This is one accident for which the saying 'Time is a great healer truly applies, but as Louise, I think it was said, we do have to work at it

Thinking of you Vivian, I do hope that your problem is resolved I know only too well how drained, restlessness and vivid dreams can leave you ( this remembrance is from my pre SAH life ) now my prob is the opposite, I could probably fall asleep in the middle of the road

Thinking of you both It is so worrying for carers and horrible for the cared for when this sort of thing happens. JHope things get better soon