Update

[Guest Hannah]

Hi everyone,

Thank you once again for the comments and support over the past few weeks. Regarding my mum, she came home during the day for 5 days over the Christmas period -which was great albeit very hard work for dad and I.

Generally, I get the impression that things are not so good, with alot of murmurings from the staff that she should go home soon and this is likely to be as good as she gets. The social worker has told me that we need to consider long term care options and power of attourney. Depending on which staff I have spoken to throughout this she has had no stroke, a minor stroke or a massive stroke. No-one at the local hospital takes into consideration about the SAH as she is under a care of the elderly specialist on the stroke ward.

I read with interest a previous discussion about 'stroke'. I was told that the haemorrrhage was a type of stroke but the conventional stroke as we know it is caused by the vasospasm permanently constricting blood vessels.

Mum has got a bit more confused lately which I suppose could be due to hydrocephalus, tiredness over Christmas or new drugs.

The negativity at the hospital is starting to affect mum and she is getting upset. Its strange that with the doom and gloom prophecies, she still doesn't seem as bad to me as they say.... yes she certainly cannot live independently yet, but she has come so far and is still making progress.

So much of what the experts tell me conflicts - so I have made an appointment to see her consultant later today. I'm sorry that this doesn't read very fluidly, I'm just in a bit of a state recently and just trying to get her the best care.

Take care all, Hannahx

[Louise]

Hi Hannah

Well that was good that your Mum got home over Christmas & I know how tireing it would have been for you.

In my case they thought too 'this was as good as it gets' but things do keep improving all the time although I have to say at a very slow pace, I needed a lot of simulation my husband got me word seach books kids ones & later kids jig-saws the big chunky ones they get the brain moving I used to get sooooo frustrated I couldnt do it, a childs game I used to think to myself but now I know they helped me a lot & I'm so grateful to Ronnie for his insisting I do them.

Your Mum has come so far & she will contiue to do so you have to be strong & also get the balance right that you look after yourself too, to be able to do it.

Take care

Louise.xx

[Karen]

Hi Hannah,

I'm sure that your Mum must be really proud of her daughter!! Keep on keeping on!! Whatever you do, don't lose faith that your Mum won't get any better. It must surely be dragging her down, so maybe with the right nursing support, she will be better off leaving the hospital. I don't think that some nursing staff realise how their comments can affect you.

My SAH didn't affect me as badly as your Mum, but I certainly wouldn't have been able to live independently in the early months. Even now, on odd occasions when I'm having a bad day, I still rely on the help of friends and family, even if it's just a lift to hospital for physio etc.

There's alway hope Hannah and your Mum is still young enough to make more recovery........I'm 44 and 18 months on, I'm still continuing to recover......I'm slow, but sure! I've had plenty of setbacks and hard knocks, but I haven't given up.....too ****** stubborn!

I have found that certain drugs have played havoc on me and I believe that these have instigated a lot of setbacks ..... especially the anti seizure drugs, which thankfully I'm no longer on.

I get confused when I'm tired or stressed ..... get my words messed up or forgetful etc .... but again, that's improved with time.

I'm sorry Hannah that you're feeling so low, support is so vital, as is the correct information. A lot of the medics don't seem to know too much about SAH, but there's a few of us on the board that are proof that recovery is ongoing and that there isn't a definitive cut off point.

Hope that you are able to stay positive.

Lots of Love K x

[Skippy]

Hi Hannah

I'm with Karen and Louise on this. I'm four months in and have made what thay call 'a remarkable recovery' and have been told that I can resume normal daily activities as far as they are concerned. Thats all well and good and probably phyiscally they are right - but certain things still cause pain, tiredness still causes confusion and bad tempers. I don;t believe that there is a cut of point for recovery from an SAH, its an ongoing process that needs more than painkillers and a plaster - the brain never really stops working and thats why it takes longer to repair. You know your mum better than any medical staff and you will see changes and improvements in her that they won't acknowledge and not even your mum will realise. You are doing a wonderful job staying positive and supportive and thats all that you really need to do right now. Let your mum know that you have faith in her and that you love her, be there with open arms, hugs, love and laughter - it does the world of good.

Take care, sending best wishes

Love Sami xxx

[Annie]

Hi Hannah,

Sami is right on with the word "process". And Louise can testify that sometimes the "pros" have no idea of what the chances are for improvement. I believe too that the work is only beginning and you can expect to see improvements. Come here any time to ask questions or get a hug. Here's one now:

(((((( ))))))))

xo,

Annie

[Guest Hannah]

Thanks everyone, just what I needed.

I spoke to the consultant and true to form he did a wonderful managing expectations. He explained very clearly that she had not had a stroke in the same way the other older folk on the ward had but explained that the severe vasospasm has created permanent and lasting damage globally across her brain.

As far as they are concerned in the 3 months that she has been in hospital she has made little improvement and it is in these first few months that the majority of improvement is made. He accepts that there will be intermittant slow improvement over the next two years but not enough that she will be able to walk, transfer to the toilet, wash and dress herself, drive or work.

She has severe spasm in her left leg which prevents her putting her heel on the floor - thereby not able to create momentum to walk. The drugs that she is on to try and lessen this make her tired and don't work so they are looking at injecting botox into the muscle.

Still, hearing him say this - I don't believe it. Yes it is entirely probable that she may not drive or work again - but I am certain that she will improve to the extent that she can get around. I don't think I'm being realistic, I know and acccept that she will never be the same as she was but I do think she will improve so that her quality of life is better.

Maybe its me sticking my head in the sand, but I'm choosing to take a pinch of salt with expert view. I went to see her after the consultant and she was doing the daily mail crossword - correctly (albeit with terrible handwriting)

Take care, Hannahx

PS I like the phrase abot the brain taking longer to heal as it is always working.... sounds practical to me.

[Karen]

Hi Hannah,

I was also told that the majority of improvement is made at the 3 - 6 month stage, then after this point it slows down. To be honest and speaking from my own experience, I have slowly improved as each month has passed. I'm definetly not the same as I was before the SAH, but my quality of life is now pretty good and I believe that I'm still improving and will continue to do so.

I haven't been able to return to work and I'm limited with driving, due to my eyesight, it takes a long time to come to terms with the fact that I'm not able to do all of the stuff that I used to and run around at 100 miles an hour.

I don't think that you're burying you head in the sand Hannah, I think that it's good to have faith in your Mum and I really wouldn't be surprised if she's able to achieve so much more in the coming months. If she's able to do the crossword in the newspaper, she's doing pretty okay in my books!

It sounds as though your Mum has a loving and supportive family around her and I think that this is paramount to her further recovery.

You're doing good Hannah!

Take care and remember to look after yourself as well,

Love K x

[Skippy]

Hi Hannah

There is nothing wrong with remaining positive. No one knows how an individual is going to recover they can only base their expectations on previous experience - this doesn't mean its going to be right. I couldn't do the ****** crossword in the paper before my SAH so I wouldn't stand a chance now!!!

If your mum knows you have faith in her then this will spur her on and make her more determined to recover as much as possible. A mother's love and determination where her children are concerned can never be underestimated.

And double what Annie says about questions and hugs - sending another one to you and one for your mum too.

Take care

Love Sami xoxox

[Annie]

That's hard news to hear, Hannah. Your Mom is so very lucky to have you. We are all pulling for you both. Hang in there, and don't forget that you need a little mental holiday from it all from time to time yourself!! This is a lot of change in your life that came on so suddenly. You have my permission to go to your room, shut the door, read a magazine and eat chocolate.

xo,

Annie

[Skippy]

Yep I'll second that idea Annie

xoxoxo Sami

[Guest Hannah]

Thanks all,

I suppose what I'm struggling with is that she has been transferred form the regional neuro hospital to a local hospital that doesn't specialise. I just wonder how many patients like my mum they get through the door...

I have suggested a clinical neuropsychologist to be told that they don't have one. However they do have a clinical psychologist that works on the stroke ward.... but she's on maternity leave untill the end of March. How useful. I would give anything to have her transferred back the rehab ward in Addenbrookes.

The difficulty is that the consultant is in charge of her treatment, if her syas that she will improve no further it means that she is able to go home and her therapy is reduced to once a week. In my mind she desperately needs the therapy, I have mooted the possibility of her going to a residential rehab centre, only ot be told that there are only two near us and she doesn't meet the criteria for either one. This makes me think that oh so there is obviously a scale... what about trying to get her into one that is further away from home? So I'm going back to the consultant next week. Then to her consultant in Addenbrookes. Then PALs. Then Citizens Advice Beureau. Anything for her to receive continuing therapy.

All hugs gratefully accepted.

Take care, Hannah

[Karen]

Hi Hannah,

What a battle you're having ....... Have you tried getting any advice/info from any of the other online stroke/brain sites? What a shame that you have to struggle like this, in order to get your Mum the help that she so desperately needs.

It would be interesting to know what sort of criteria one has to meet in order to get into a rehab centre. I have often read from other stroke survivors, that in a lot of cases it's a "postcode" lottery as to what help you get.

It may be worth giving some of the larger charity sites a call, as I very much doubt that your Mum is the first to experience this. Wishing you the very best of luck Hannah in your endeavours and hope that your Mum can get the care that she needs.

Hope that you will let us know how you get on.

Love to you and your Mum and sending big hugs, like I said before, keep on keeping on and don't lose faith.

K x

[Louise]

Hi Hannah

I agree with Karen what a battle your having you shouldnt have to be doing all that....

I went into a re-hab hospital after my SAH I had to learn to do things all over again things that people take for granted, not long after I was out of the re-hab I was rushed into the Neuro again with Viral Meningitis & terrible to say but I refused to go to the Re-hab hospital for a second time.

I do think that reading your entries that a Re-hab hospital where there's phycio, phycologists & OT, (please excuse spelling) would be of great help to your Mum's recovery I wouldnt say that after 3 months I stopped recovery I would say its be on-going all the time some of it noticable & some not so, but thinking back to the first year, well I couldnt have done this or holding a verbal conversation wasn't really me either I could never think of the words for things, yes things have & do improve greatly.

Wishing you luck with it.

Take care

Louise.xx

[Karen]

Hi Hannah,

Noticed that you posted on the Different Strokes site ..... have you managed to find any info that might help your Mum's situation?

Love K x

[Guest Hannah]

Hi Karen,

Posted on the Different Strokes site because I was trying to see if anyone else had had the same trouble accessing rehabilitation, plus I had a few specific questions about FES (sort of a machine like a tens machine, gives electrical impulses to stimulate muscles in time with walking, so the foot gets used to a regular motion).

A few useful comments back, inlcuding a case of a lady who has undergone the botox/FES therapy for spasticity. All of which will strengthen my argument when the time comes.

Rehab, after bombarding consultants a both hospitals she has been to, even to the extent of saying we won't have her home or give up work (which I know sounds harsh, but we were trying not to give them the option of sending her home too early), they are now considering a residential rehab bed (Norfolk and Norwch). Which, if it comes off, is great news. The Norfolk and Norwich do use FES in the PT so I may step up the campaign if and when we get there.

More waiting and seeing, but we are that step closer to getting some intensive therapy.

Take care

Hannah

[Karen]

That's great news Hannah!

I read the replies that people had sent you and I must confess that I'd never heard of a FES machine before....so something else I've learnt. I've read up about the use of Botox before, but it just shows that there is the technology to deal with these problems, it's just whether or not you're lucky enough to be able to access it.

It's just damned annoying that to have to struggle to access information. Thank goodness we have computers, how would we manage without them?

You were quite right to say that you won't give up your work to look after your Mum at home, as she probably wouldn't get the therapy that she needs. I think that you have to dig your heels in Hannah, it doesn't sound harsh, at the end of the day you just want what's best for your Mum.

Good luck,

Love K x

[Guest Hannah]

Hi all,

Not been posting much recently.... mainly because not alot has been going on and I've been trying to take care of myself a bit.

Well....since I've been gone I've put on half a stone - woohoo! Now I'm only about a stone and a half underweight :?

But my main reason for posting is that we found out today that mum has definitely secured a place in Norwich for further rehab. This is great because the past week hospital staff have been making definite 'going home' noises. Mum in herself is not too bad, we have established that she still has the same personality, humour and intelligence (she still beats me hands down at scrabble) but there are massive holes in cognition. Hopefully this will return somewhat over time.

Well nearly 18 weeks in hospital and it seems as though we may be on the final leg..... I'll keep you posted

Take care everyone

Hannahx

[Karen]

Hi Hannah,

That's great news about your Mum ..... hopefully you will see the small changes in her as times progresses......when I think that I'm nearly 18 months on.....it ony just feels as though I'm beginning to get back into my own skin....not sure if that makes any sense to you? hard to describe it really, think that it's going to take me a long while to re-discover the old me.....but I'm starting to head that way. Time and lots of patience is needed for everybody concerned.....it's a long journey for some of us.

Glad that you're also looking after yourself, which is just as important....as us Mum's worry about stuff like that....

Hope that you will still post us with the odd bit of news and hopefully your Mum will be able to post herself as she gets better over the course of time.

Love to you both,

Karen x

[Louise]

Hi Hannah

That is really good news, I've just asked my husband & he says that I was in hospital then the re-hab for about 14 weeks I find that the recovery is still on going.

Take care

Louise.xx