Ash
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10 GoodAbout Ash
- Birthday 08/05/1973
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London
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Hello all.. Long time no speak i know..:redface: First of all a very happy new year to you all and i hope 2011 is a good one for everybody. I can only apologise for being away for so long but as you all know there's so much to do sometimes it gets hard to find the time to post! I wish i could say mum is much better but in truth she's been kinda at the same level for a while now. Speech wise she's still whispering and mobility wise she's still struggling with anything other than her left arm. Her mood is pretty up and down and she does still have some very low days but by now i think i've accepted that will happen. The staff at Putney are all really nice and we're having a case review on Tuesday when we'll get the chance to sit down and see where we go from here. It's nearly 6 months and mum is still very disabled. I don't know what to expect anymore but i just want her to have some quality to her life and make as much improvement as is possible. Whatever happens i'll do my best to make her life as comfortable as possible and make sure she gets all the treatments she deserves. It's harder now as i'm back at work so have to juggle that as well as all the other things in life but nobody said it was easy. I still think she's got a lot of improvement to make potentially but she seems to have hit a wall. She's very tired and weak and it's really hard to see her in pain and unhappy but i try and tell myself that this is only the first chapter of what's going to be a long book. Hope you're all well and had a good xmas and i'll keep you posted even if i'm not sure exactly when i'll next post! Best wishes to all of you for the coming year Ash
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Hello folks.. Great to read your messages as always and i hope you're all doing well. Well since i was last here there was a bit of a re-think over plans for my mum and after visiting Blackheath i wasn't sure that was the right environment for her. So basically i refused a place there and we asked the Royal Hospital for neuro-disability in Putney if they could admit her. We had initially applied there but were told the wait was too long but after a lot of emailing and phone calling i'm pleased to say she was accepted and moved there this week. It's no nearer than Blackheath but i just felt that it's a better place for her and she would be happier there. She seems to have settled in well there and the staff seem lovely. I can't fault the hospital so far it seems to have pretty much everything she'll need for rehab. Mum seems happy with the choice and she's certainly in good spirits. She's eating and drinking really well and the speech is coming along but her voice is still very whispery.. hopefully the Speech Therapy there will help with that. Movement wise her left leg seems to be coming back a little but her right side is still rather stubborn but her left arm is good. I really like what i've seen of the physio and OT stuff at the Royal so i'm hoping she'll make some good progress with that there. I must say it's nice to see her sat up in bed watching tv again and reading the papers The travel is a long journey, and my dad struggles with it, but we're all convinced the Royal is the right place for mum which is the main thing. We'll just have to pace ourselves a bit and my dad can take a few more days off to rest. So we're onto the next stage with mum and it's all quite exciting. A new place will hopefully stimulate her a bit and there's certainly more for her to do at this hospital and i hope she'll be happy and make as much progress as possible I can't thank the staff enough at the Whittington tho they really were good to us, letting us stay well after visiting hours, and helping my mum loads. Lovely to hear from all of you as always and i hope you're all doing well. The nights are drawing in a bit now so i hope you're all looking after yourselves and staying warm and safe I'll speak to you all soon Ash
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Hello again everyone. I know it's been a long break but just letting you all know my mum is doing ok. She wasn't accepted by Homerton but she has been accepted by the Heathside neurodisability unit at Blackheath. So that is now where they plan to send her. It's not ideal as we live in North London and that's a very long way away but there doesn't appear to be an option nearer us. Other than that mum is getting a bit more speech and awareness back. She's still whispering rather than talking and appears medically stable. Movement wise she's got a good left arm and a bit of movement in her left leg but her right side is still not really moving so she's quite restricted still. More physio input at Blackheath might help that i hope. She does appear a bit brighter and happier and she's usually got a smile for everyone who stops to talk or say hi. She is able to read and is quite alert and orientated. She is suffering from dyspraxia but the Speech and language therapist is working and she does seem to be doing a bit better. Her appetite is great, she's back on most normal foods and polishing meals off pretty well So right now it's just a question of waiting for her to go the rehab centre. I do have some worries about it but we don't seem another option for her and at least she'll have her own room there. We can decorate that and make it as homely as possible i hope. Anyway i've not forgotten you all and all your kind words and help won't ever be forgotten. Hope everyone is doing well and i'll try not to leave it so long next time! Ash.
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Evening all.. Hope you all had a nice weekend..well we've got a little day trip tmrw to the RNRU at Homerton hospital. Don't know what they'll say but there's no point fretting about it, we'll just have to deal with whatever happens. At least my Mum gets a little outing to sunny(hopefully!) East London KelBel - I did talk to the speech therapist and she's given us some exercises to do liking trying to make mum cough and build up her ability to make noises from her throat. Then there's one where she has to blow a tissue and see how hard she can expel air. Plus we've got a little workbook of questions and pictures etc to go through. It's a bit like being back at school but my Mum was a teacher for 30 years so she'll enjoy it x JayKay - Sorry to hear about your Dad, that's very unfortunate. Great news about your mum tho The therapist did say she didn't think there was anything wrong with my mum's vocal chords it's maybe more a case of her not being strong enough to actually make a noise above a whisper. Like you say patience and more patience is the answer x Take care all and i'll speak to you all soon and let you know how things are going. Ash
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One thing i wanted to ask is if anyone has any exercises or anything that can help regain voice or strengthen the vocal chords? Mum can talk but it's only a whisper and i was wondering if anyone here had any tips or advice for how to make it louder and regain volume in her voice? She's working with a speech therapist as well so hopefully that will help and i'll get a nice loud hello one day soon!!
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Hello all.. Hope you're all doing well.. I've had a few things going on so not been able to post here much but haven't forgotten you all and appreciate your feedback and responses as always. Well mum is doing ok..she's now on a soft food diet and is still managing to whisper a few words..she can answer simple questions and count, do the alphabet and when i leave at night she manages to say "goodnight and drive carefully!!"..typical of her to think of me even when she's so ill She's got movement in her left arm, but as yet not too much else altho they are saying she's doing a bit better in the physio so hopefully things might improve on that front. As for her next move i really don't know. The consultant from Northwick Park hospital was of the opinion that it might be too soon and too intensive for her to be there. So now we have a visit on Monday to the Homerton Regional Neuro-Rehab Unit to see what they think. If she's not suitable for that then i'm not sure where she'll go next which is a bit of a worry. She seems a bit tired out this week, but i know they've been doing a fair bit of physio with her and they say she's doing well. Skippy/Lin -Thanks for the excellent advice on the anti-depressants..as you both said anything that can help her feel better is probably a good thing.. She's not a naturally depressive person at all but she has suffered an extreme trauma so if anti depressants can help then i'm all for trying it. Hopefully she'll get the same sort of benefit from them as you both seem to have done Maggie - Good idea, i did actually visit my doctor when my mum was first ill, so it might be useful to go back and have a chat with him as well. Hope all of you guys are doing well and i'll speak to you all again soon! Ash
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Hi folks.. Thanks for all the kind words as always its a pleasure to read your replies Mum is doing ok, now feeding on puree and a bit of yoghurt and she can even manage to use the spoon herself albeit rather slowly lol. However some of the staff are a bit concerned that she might be a bit depressed so they are mentioning anti-depressants.... I do think she's seemed a bit less bright over the last couple of days but then being stuck in a ward all day isn't much fun and that would be understandable. It seems a bit drastic to start on anti-depressants but then i'm no expert. I do feel a bit concerned as before all this my mum was the last person in the world who would consider medication for depression.. She's fine otherwise and the other day i did ask her some questions and she managed some replies in a very soft whisper which was lovely. I know this is a long process and there will be ups and downs so i guess this is all part of the road. Just want to see her happy but i don't know how medication will help that?? I do know depression is common in SAH recovery and i'm sure some of you have experienced it. It's just that my mum isn't really able to speak and say she feels depressed so it seems like that decisions are being made without her saying so which doesn't feel quite right. Haven't mentioned this to my sister or dad i'm not sure how they'll react... Anyway i'm knackered so off to eat and sleep for a bit and i'll catch you all again real soon. Best wishes to all you guys Ash
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Hey all..thanks for the kind words. I know these updates are getting a bit more sporadic but i haven't forgotten you all!! Just been a bit busy and i'm trying to get back to work so things are getting a bit hectic. Mum seems to be doing ok and she has started eating puree now. She even managed to feed herself today which was nice No talking yet and she's still not got a lot of mobility on her right side or legs but at last the trachi has all gone and she's breathing on her own now and apparently comfortable. Not sure when but they are looking to move her to a rehab centre asap...probably once the feed has been finally removed. I think she's at a stage where she needs some really intensive work now to try and get things moving. it's defo going to be a long slow journey but we'll hopefully get there. She's always smiling tho and laughing so i take a lot of comfort in that. I'll try and be back a little quicker next time but love and best wishes to you all Ash
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Hi guys, Sorry it's been a while again since i posted but had a few things going on. Mum has finally had her trachy removed Have to say that's a huge relief and she's apparently coping well without it. They have even tried to feed her some yogurt a couple of times to assess her swallow! She can move her left hand and arm from the elbow and there is some movement in her right arm fingers now which is good as there was previously nothing on that side. So far she hasn't been able to speak at all and is working with the speech therapist on that. She does nod her head as if to say yes or no to questions but i'm not sure if she's understanding them. They have also said they will be looking to transfer her again to a specialist brain injury rehab unit tho not sure where. Northwick Park is apparently the favoured choice. So things are a bit better I'm just waiting for the day she manages to say a word, i'll probably do a cartwheel or something lol. Hope you're all taking care of yourselves too and best wishes to everyone Ash
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Hi Karen, Well it's brilliant to read about your mum and how well she's recovered. That is genuinely inspirational. It's been 5 weeks now and my mum isn't yet able to speak or move much other than her left hand. It's difficult to deal with, especially for my dad, but your mum shows that patience is the key. If your mum took 8-10 weeks to respond then it's still very, very early days. We shouldn't ever expect too much too soon. I do feel helpless at times but i've accepted it will be a long slow road.. I do feel uplifted reading about your mum's recovery and it helps so much to have read about her. Remaining positive at all times can be hard too so any encouragement is always really nice. Love to you and your wonderful mum and i'm so glad you're posting again Ash
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Hi folks, Well it's been a few days since i updated you all..Mum is still stable and they are now deflating the cuff on her trachy for up to 4 hours at a time. She gets put in the chair twice a day for 2 hours at a time and she's now got some movement in her left arm from the fingers and elbow. Apparently today she tried to pull the feeding tube that's in her nose, which was a bit naughty. They put a new one in and they are giving her some extra fluids for something. I think she had some tummy troubles but it seems to be under control. She's had a speaking valve put in for 2 hours at a time but so far she hasn't said anything or tried to. My dad seems to be struggling with that and the sister asked me today to talk to him as they were a bit concerned he wasn't really understanding this process to well. He's quite old and this is all a bit frightening for him. He was very reliant on my mum to do things for him and seems to get confused and frustrated at the fact mum isn't responsive. I'm going to have to sit him down again and speak to him and make him understand again this is a very long term and slow recovery but it's hard for him to deal with. He just wants her to talk and come home so it's very difficult if i tell him that that no one can say when or even if that will happen. I prefer to remain positive at all times though and i know my mum would take that approach too. It was my sister's birthday today and she brought her one year old son into the hospital to see mum for the first time. That was quite an event!! He had all the nurses queing up to cuddle him Mum seemed to love seeing him so although he is very young i think it was a good idea. It made me sad at first to see mum not able to play with him as he's her first grandchild and she adores him, but then seeing her smile when she saw his little face was nice He wasn't too noisy either lol I've asked to speak with a doctor about things as i haven't had the chance to do that since my mum moved hospitals and they are going to arrange that. We'll know more then and i'll have a bit better idea of what is going on. Hope you're all doing well and i'll speak to you all soon Ash
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Hi everyone, Thanks again for all your good wishes. Since the move Mum seems to be doing quite well They are now deflating the trachy twice a day and so far she's not suffering any adverse reactions. She had no oxygen at all today for a while and seemed to cope pretty well with that. Good news is her left arm and fingers now seem to have started moving!! That was pretty cool when i first saw that, it was like seeing a baby take their first steps or something lol She's having physio every day and now we're nearer home lots of her friends are popping in so there's a steady stream of visitors which seems to help her as she always smiles when she sees a familiar face. I hope all of you are doing well too and taking care of yourselves. I'm going to try and get to the gym tomorrow and i went for a run today, as i've always been into keeping fit but not really bothered with it for the last month. It didn't seem that important but seeing my mum improve a bit has made me feel a bit more like my old self. Take care all and i'll hope to have even more good news next time Ash.
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Evening all.. They have now moved my mum to her local hospital, The Whittington in Archway. She seems to have handled the move pretty well but had a slight temperature tonight. The nurses have said she seems to be more alert and certainly her head now moves more than it was doing which is a good sign. There are more smiles too, especially a really big one yesterday when one of her friends visited The physios, doctors etc will start assessing her on Monday so i guess that's going to be another step in the right direction. I was feeling a bit confused last time i posted but feel a bit better now the move has gone through. The ward seems nice enough and she has a lot less tubes and things. It's now the trachi and a feed and that's about it. They still do all the usual checks and things but she does seem relatively stable at the moment. It was nice reading your messages again after that and i will try and start to send a few pm's to people as i feel a bit guilty not doing so after you all take the time to read and reply to my posts. I can only say you don't know how much it has helped me reading all your replies and kind words and it's all coming from people who know so much more about this stuff than i do. You're all so inspirational and i've drawn real comfort from this at times when i've felt low and can't thank you all enough again Thanks and best wishes to all as always. Ash.
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Hi Karen.. I'm so glad you posted again, it's really helped me reading about you're mum's wonderful recovery My mum suffered a severe SAH just over 3 weeks ago and after coiling is now recovering. At the moment she's not responding or moving much at all and it's a very scary time but reading about your mum has just lifted my spirits Wishing you and your family all the best. Ash
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I do really confused about things tonight. How long will the lack of movement and response last? Is there anything i need to look out for or be aware of? Sorry guys but i've just been feeling a bit lost tonight.
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