phil13

Thank you Sandi, and its nice to meet you. Sharon came out very badly from her haemorrhage four and a half years ago, and is in twenty four hour care. They said she wouldn't know anyone, but its turned out quite differently. Thanks and take care, Phil

Hi Evryone, Its been quite a while since I logged on here - things have been frantic at work and by no means in a good way. I'm not a one to be off work but found myself off work for a week with a muscle spasm in my back! And there is a big restructure at our place with inevitable redundancies - not good times, very stressful hence my back!!! Sharon smiles every time I go in to see her and what a big smile it is! She continues to say lots although some I can't understand which frustrates her, but she now laughs when I joke on with her! I took up playing the cello in March - an incredibly addictive and wonderful instrument - and I've said to her on many occasions that I will have to play something for her when I get to a decent standard. However this week I said that if she doesn't like it she can spit at me and I'll stop, to which she started laughing (mouth wide open and a huge big groan from her). She is now beginning to open her left hand and hold on to my neck - small beginnings of motor skill but thats what we want. To see her happy is a wonderful thing despite her many problems and we always had a great laugh together anyway, so to be able to still have our relationship is truly inspiring. I must make more of an effort to post on here in future. Take care everyone and I hope you are all well. Cheers, Phil P.S. I caught her on video singing along to YMCA! Wow!

Hi Everyone, It's been quite a while since I've been on here and quite a bit has happened over the past few months. Sharon continues to improve and inspire me with her sheer determination and personality. Every time I go in to see her and she hears my voice I get a lovely smile ,and she says a lot of which I, frustratingly, can't figure out. She frequently asks me if I'm happy because she says she worries, and this is Sharon to a tee; thinking about other people other than herself, even where she is now, bless her. It seems that despite what the doctors said three and half years ago, about her not knowing who anyone is or having any memory of before, has turned out to be quite the opposite. On her birthday, she said 'I love you' to all three of her children which thrilled them to bits! Last night I decided to have a bit of fun with her and said, 'Well, I've heard of people wanting to have a bit of a break from their partners, but isn't this a bit drastic sweetheart?' Her reaction was the biggest 'teethy' smile I've seen yet, and you could see the laughter in her eyes! Even when my brother phoned me the other night, he heard her say, 'Hiya Tim', and he hasn't actually been in to see her yet. Like I said, a lot of what she says is difficult to make out and in this case a fresh pair of ears was all that was needed. She shed a tear the other night when Minimol told us that the minibus was out of action, as we had planned to take her to her nephew's wedding next Saturday, just for an hour. Bless her, she was really looking forward to it, but every time I've planned to bring her home for an hour something has put the spanner in the works. It's such a shame, and quite heart wrenching to see her so disappointed. It still is a long haul and I have no idea how far she will come on, but I have no doubt whatsoever that Sharon is still the Sharon I have known and loved; she is such a character and an inspiration. I hope you are all well and I'll speak to you soon. Phil

Hi Everyone, I haven't been on here for a while but I thought I'd tell you about my birthday yesterday. I asked Sharon to say 'happy birthday' as I said it would make my day to which she did, bless her. BUT I DIDN'T EXPECT HER TO SING IT AS WELL!!! I only realised when I uploaded the videos today and was gobsmacked! The previous day she was asking if I was happy because she worries. She's getting very quick responding, and while at the time it's hard to figure out what she's saying, I tend to miss chunks of her conversation. When I found the video today and realised she was singing it completely choked me up. The best birthday present I've ever had! Take care everyone, Phil x

Hi Everyone, It's been a while but Sharon continues to slowly but surely improve. I must get a photo posted of her smiling as this is now a regular occurrence when I go in now and is so uplifting. Even perhaps one of the videos. She is getting quicker and more direct with her responses (this does vary though) and asks questions which unfortunately are hard for me to decipher to which she shows her frustration. In one such instance, I came off the phone to Edward, and straight away she was saying his name clear as a bell but wondering who he was or perhaps why she should know him. There isn't really a day where she doesn't say something even if it might only be 'hi baby' or 'help me' which tends to be momentary and more to do with her positioning - some of the nurses have a tendency to place her lower on the bed so that her head is only raised and not her shoulders which irritates her catarrh. Everybody says they have noticed a big improvement in her over the past six months and I sincerely hope she continues on this course. It will take years, I know but if she continues as I'm sure she is very determined, one day I'll have her home again. Let's hope and pray. Take care, Phil

Hi Everyone and thanks again, Sharon is certainly firing up again and tonight, she responded with distinct verbal answers to three questions I asked her in addition to her smiling. It took about a minute for her to process the information but out it came and there was no doubt. 'Are you OK sweetheart?' - 'Hi baby, I am.' 'Have you been in the chair today?' - 'I have.' Can you lift your left hand up as far as you can?' - this was a tricky one, as she attempted to but responded verbally, I'll have to replay the video on my phone but I think it may have been, 'I can't.' Last week she asked a few questions of her own, and while they are hard to decipher, they are definite questions. This is a great development for her and I'm so proud. I'll keep you posted. Phil

Hi Everyone and a belated Happy New Year to you all! Sharon has resumed her activities bless her and smiles when I go in to see her and when I talk to her. She is saying words and phrases again, and when I mentioned Edward, her son last week, she immediately responded saying his name. However, she was saying his name with confusion, as in I think she was trying to remember who he is, bless her. But it was an immediate response which is great. I hope you are all coping with the snow - isn't this how winter used to be? Speak to you soon, Phil

Hi Everyone, Sharon has had a bit of an ordeal the past couple of days. She was admitted to the AE at Sunderland on Tuesday night because she had thrown up brown fluid twice, which they thought might be blood. I arrived at the hospital at 11.00pm and sat with her until the doctor came in at 2.30am. After taking a blood sample and listening to her heart he said he couldn't find anything wrong with her so she was sent back to the home - 5.15am in the morning we arrived. I managed to sleep on and off for about an hour before the ambulance came - my head was resting next to hers as I held her hand, and it was so lovely to be next to her after so long. She twice called out 'Oh baby' with a croak, bless her. The next morning I got into work and then Minimol phoned me saying Sharon had vomitted again and was going back up to the AE. When I arrived at the hospital, my sweetheart was bringing up mouthfuls of brown fluid and pushing very hard against what appeared to be constipation - she did this nonstop for three quarters of an hour, bless her. But they said that they still couldn't find anything wrong and if she vomitted again and it had granules to bring her back in. A colleague at work mentioned that her mother had suffered from extreme constipation and the symptoms were identical - the fluid is a mix of stomach acid and waste that's risen up from a blocked bowel. We arrived back at the home in the afternoon, and I told Minimol what I had heard, so we both spoke to Sharon's GP who said that if she didn't vomit that night, he'd come and see her the next day. My baby was so knackered when I left and I felt so sorry for her. She didn't bring anything up and the GP saw her and has doubled her anti-constipation medication for the next month. She appears to be OK now but is very tired which is to be expected. I'll keep you posted. Phil

Thanks Rod & Paul, It is a bit disheartening when there's a lot of activity and things are so positive, and then all of a sudden she's sleeping a lot. But Sharon is twitching a lot in her face and her eyes darting about which is a lot of neuron activity so I tell myself to be patient. She had a facial spasm the other week which is very bewildering for her and quite distressing to watch but the plus side is it's nerve activity and the more the better. She's beginning to get, what would appear to be more purposeful with her hand movements - she grabbed hold of the hoist last week and wiped some water off her face when she was in the bath so the nurses tell me. I know I'm being careful here as it may be just flexion, but it is something to keep an eye on as she moved her hand up to my hand which was on her face last night. Small improvements perhaps, but it looks like progress. Anyway, I'm off to see her now and taking my marking with me; it's that time of year unfortunately. Speak to you soon and thanks again, Phil

Hi Everyone, It's been a while, I've been so busy at work. Sharon has been back at the home for just over two weeks now and she's sleeping rather a lot which I sense is to do with being worn out from the therapy and assessment at Walkergate. It'll be interesting to see if the therapy will benefit her in the future, but at the moment I'm a bit bit flat from her being so active in the past few months to now sleeping most of the time. The assessment was very helpful, and one of the assessors is going to come out to the home to speak to the nurses about how to deal with Sharon and avoid 'over stimulation'. They didn't get much out of her which I suspected from the beginning. They suggested giving Sharon 'zolpidem', a sleeping pill, which was in the media a few years ago when it was awakening some long term vegetive patients. However, all it did with Sharon was put her in a foul mood, and didn't even send her to sleep! They are generally sceptical about this drug which, contrary to media repoirts, only works in certain cases, and I think Sharon is a bit further forward than minimal response. Anyway, we'll see how she gets on after she's had her sleep. Speak to you soon. Phil

Hi Everybody, Sharon's due back at the home next Wednesday and I, personally, can't wait. She's been bringing up bits of her feed ever since they changed it when she arrived; why they changed it I don't know! I don't think she has been very happy here at all as she's been very tired which has affected her ability to respond so I don't know whether they have got much out of her. She threw up a whole feed the other day and ended up with a temperature and a very sore throat. I asked her what was wrong, and she croaked 'Where were you?' which nearly brought tears to my eyes. I'm wondering whether she thinks she's arrived in a mental asylum as some guy, obviously with some kind of brain injury, intermittently screams which echoes down the corridors. It's been three weeks since she's said anything and it's only now after I mentioned to her that she'll be going back to Falstone Manor that she's started to speak again. I'll be glad when she's back in the comfy secure environment of the home. The SMART results are on Monday and quite frankly I couldn't really care less for this meeting as it's my sweetheart's welfare that's my main concern here - I said to them in the beginning that they'd be lucky if they get anything out of her but we'll see. I don't want to paint a negative picture here as the therapy she's received will certainly benefit her, but her happiness is paramount above everything. I'll speak to you all soon. Phil

Hi Everyone, Sharon hasn't said much over the past couple of weeks, mainly because she's absolutely shattered off the physio and SMART assessments. One main progression though, which I found out yesterday, is she is now beginning to support her head when she is in the chair. She has also attempted to say something while she's been in it which has never happened before. It's a different atmosphere this time though as the team are very much working with us. We had a meeting at the beginning of last week where I told them about Sharon being pretty much non responsive in her chair. They were very grateful of this feedback and have taken steps to ensure that they assess her in the best conditions. She's still scheduled to arrive back at the nursing home on the 18th November, however, the nurse said that it certainly wouldn't be the end of any further treatment which is very encouraging. At the beginning, I was very concerned because Sharon appeared to be very unhappy so I asked her if she was happy here, to which she replied 'I am', so she must be feeling the benefits of being here. I'll speak to you all soon. Take care, Phil

Hi Everyone, Sharon was admitted to Walkergate last Wednesday - I travelled up with her and went through the admin with the clinical team leader Barry, and Sharon started straight away with 'help me', bless her. However, things weren't so smooth on her first day, as they changed her feed and when they went to move her at my request, the nurses laid her horizontal which greatly distressed her and she ended up throwing up. I came away that evening very depressed. Anyway the next day I told the nurses that laying Sharon horizontal was quite dangerous as she could choke and was probably responsible for her throwing up, so they are going to keep an eye on her and ensure that it doesn't happen again. She appears to have settles in now though and seems quite happy. I hate the place, not the staff they are great; it's clinical and depressing and a different world to the home which was homely and very comfortable for Sharon. But it's Sharon's interests and well being which are the important factor here so I'll just get on with it. I'll keep you posted. Take care, Phil x

Thanks Paul, let's hope she does her stuff, bless her. Love to you and Lin, Phil x

It certainly does, and Sharon's starting to make a right racket so I think she may be gearing up for it! We'll see what happens. Thanks so much and take care, Phil x

Last night, Sharon's Mum told me about her distant cousin's daughter who suffered exactly the same ordeal as Sharon. After two and a half years of absolutely nothing from her they contacted her GP who called in a specialist. He referred her to Walkergate and they kept her in after the 8 week assessment. She's recovered but still has trouble walking. Anyway, I'm still not going to hold my breath and if anything does happen it'll be a surprise. Besides, the stimulus will be very good for Sharon. Speak to you soon, Phil x

And it changes yet again...8 weeks!! But I'm still not holding my breath, it will be very good for Sharon and that's what matters. x

Hi Everyone, It seems there's been a mistake made and Sharon is going to Walkergate for a one month for reassessment. Apparently, four weeks is the minimum stay for reassessment and they are quite puzzled at how someone there could make such a mistake.! Nevermind, I still won't be holding my breath for their prognosis, but it will be highly stimulating for Sharon which is a good thing. But she's still worried bless her and I'm apprehensive about her settling in after being so adjusted to the home, but we'll see. Take care, Phil x

Thanks Paul, I'll never give up on Sharon or her chances of progress, but I still live under the cloud of two years ago when she was there and probably can't shake it off. Dr Mitchell obviously hadn't had the chance to look at the videos I gave him when he wrote his report, as he states that 'Her partner believes she has said "I love you" and "help me" ' implying that there is doubt to any authenticity. Don't get me wrong, I thought he was amazing with Sharon and certainly an expert in his field, but the professional scepticism has made me feel very low. He did acknowledge that when Sharon spoke it wasn't vocalised groans and was an attempt at speech. Sharon has worked so hard to get where she is and I can't be bothered with any negativity towards her or myself for that matter from the same people who said she wouldn't progress at all. I'll see what happens of course and maybe this frame of mind is the best way to be as I may get a surprise, but I'm not holding my breath. Anyway, enough of my ranting. Thanks so much for the message and support Paul, it's very much appreciated. Speak soon, Phil x

Hi Everyone, Thanks again for all your support. I read Dr Mitchell's report from Sharon's July assessment last night. It is somewhat less than enthusiastic about Sharon's long term recovery, with phrases such as 'impossible to say that she'll progress much further than where she is now', however, he acknowledges that some progress over a period of time could be achieved in the communication between Sharon and myself. Apparently, what concerns him most is Sharon's inability to follow commands which I suppose, naturally is a problem for any rehabilitation. But it looks like the whole Walkergate thing will be yet another dreadful prognosis, which makes me wonder whether there really is any point fo her going up there yet. She's getting worried about it herself which is distressing both of us, particularly her, so I think I'll ask her tonight if she feels ready for it and hopefully her response will decide. What looked like a positive step forward for Sharon is now looking like yet another dreadful suckerpunch in the making and we could plainly do without it. I'll speak to you all soon. Take care, Phil x

Hiya everyone, Sharon said she's worried tonight and when I asked here about what it is she replied, 'everything'. On the positive side, she knows how important Walkergate is but it's awful hearing her getting uptight about something in her condition. I told her not to worry about anything and that I'd be with her all the way, and if they try to be funny about things I'd blow my top with them. She's really coming on, bless her, but at the same time the more she progresses the more it hurts me and especially her. I'll speak to you soon and thanks again for all your support. Phil x

Thanks everyone, I'll be compiling all the videos I take of Sharon to hand them over to Walkergate right up to the day before, so there'll certainly be enough evidence of her speech. Take care and I'll speak to you soon, Phil x

Thank you all so much and sorry for the rather graphic expletive but I have been at a bit of a low ebb the past few days. I've just come back from playing a gig which was great. I popped to see Sharon before I went and again after I'd set up, and each time I got a lovely smile from her - worth the two twenty minute visits, she's made my day. I've told Sharon to try and respond as quickly as she can and she will, it may take a while for her to process the information but she does understand. Last night she was shouting the words out bless her, 'Hi baby', 'I love you' and 'Help me' - she has real determination. I'll keep you all posted and thank you all for your support, I know she'll make it, it'll take a long time but she would do exactly the same for me and more. Speak to you soon, Phil x

Hi Everyone, Sharon is going to Walkergate on the 23rd September for a one week assessment. Naturally, I am extremely sceptical of them in view of the last time she was there two years ago when they wrote her off indefinitely. Plus, one week isn't a great amount of time to do an assessment of Sharon's condition. I'm getting quite anxious about it and if they try to write her off again I will blow a fuse!! One week seems to signify an attitude of 'yeah, we'll have a quick look' - it's all about money and resources. I'm going to travel up with Sharon when she goes (regardless of what anyone may say) to make sure she is OK as it will be very strange for her. This is another thing I'm concerned about, as she might completely clam up - as soon as any nurse wonders into her room at the home, she stops trying to talk immediately. Sorry if I appear to be cynical but I do think they are a pack of ******* for what they did the last time. Speak to you soon, Phil x

Thanks so much, I'm so proud of her and last night as soon as I went in she beamed a big teeth smile which I managed to snap on my phone and it's absolutely wonderful. I hope Lin is OK Paul, I haven't had much of a chance to read through the posts much but it sounds like you're both going through the 'one step forward and one step back' routine. Give it time and I'm sure Lin will show you exactly what she is capable of just like Sharon. Take care, Phil