phil13

Thank you so much and it is very good news and Sharon deserves this chance; she really has battled away these past months, bless her. I told her earlier on in the week that she'd have to be quick as she possibly could and she went out of her way so much so she was absolutely shattered on Thursday night! All the staff at the nursing home are really behind Sharon and it showed when Dr. Mitchell was there with Minimol and Gemma making sure nothing was missed. They both said that they have seen Sharon 'clearing her throat' just like the other day when she spoke but didn't think much of it until now - Gemma said she's going to listen with her brain from now on! I'm so proud of her I kissed her all over her face after the specialist left! Still a long way to go but this is what we've all been building up to so fingers crossed. Phil x

Hi Everyone, Sharon had an assessment from a neuro specialist yesterday morning at the nursing home. I got there about 8.50am as the specialist was due at 9.00am only to find that Sharon had just come out of the bath. I thought 'marvellous'; whenever she's had a bath she's completely chilled out and generally totters of to sleep! Exactly what we didn't need! Anyway, Minimol, the head nurse, and Gemma, her key worker arrived with Dr. Mitchell from Sunderland Neuro Rehabilitation Unit. He asked a lot of questions about Sharon's splint procedure and the nurses told him about her progress since she arrived at the home a year and a half ago. I told him about her speech development and handed him a disk with videos of her from the past two months. Sure enough, Sharon suddenly stirred and the whole room went quiet as I coaxed her into saying something and bless her, she delivered, much to the astonishment of the nurses as they have never heard her speak before! Minimol pushed me into showing the doctor some of the videos on my phone and while he certainly acknowledged her attempts he appeared a little sceptical - hearing them on the phone speaker isn't really that clear compared to a proper set of headphones. He asked if he could try something and he picked up a tissue and placed it over Sharon;'s nose. She didn't do anything so he placed it over her face. At this point our jaws dropped as Sharon moved her right arm up to remove it!! In his own words, this was a very good sign. He said that Sharon really needs to be in a nursing facility that can provide specialist therapy and while he was optimistic in what he saw in her, he advised us to be realistic of the long term nature of her condition. The outcome is that he is going to contact Walkergate and speak to them about his assessment of Sharon's condition. Last night I was on cloud 9 and I had quite a hangover this morning!!! I know Sharon has got a long way to go but she was really something yesterday. I had told her that she had to get a bit quicker in responding and the past couple of nights I'd walk in and in seconds she was saying something to me. But the tissue exercise had us all gobsmacked - how a simple thing can provoke a response and make someone aware of what they can do! Sharon's GP said that Dr. Mitchell was excellent in his field and we saw just that. And Sharon responded so well to him. Well, it's early days I know but things are looking so promsing, let's hope it goes well for Sharon, she deserves it bless her. Speak to you soon, Phil x

Hi everyone, Thanks so much for your kind words, Sharon is asking for help every night as well as 'I love you, my baby' which is so sweet. She is attempting to say other things which I can't make out at the moment, but she's certainly gaining her confidence and awareness of things around her. I'm still doing her arms exercises and telling her that this has helped her up until now and will continue to do so. I can't, however, do her leg exercises as they tend to irritate any potential bed sores. But when I think of how she was a year ago compared to now the difference is incredible, and I'm so proud of her. I have a wonderful video of her from two weeks ago where I was telling her that I needed her back so much because she is one that I do everything with from going out to just being with. She replied, 'I love you and I love being with you'. And then she said 'Help me, I'm all...'. At this point, I can't make it out but she's definitley referring to her condition, bless her. I would have to say that my sweetheart is just as she was upstairs which is amazing considering what I was told of her prognosis. Well it's a case of keeping up the pressure on Walkergate or possibly somewhere else. Apparently there is a new rehabilitation place in Gateshead and also, the GP tells us, a neuro specialist in Sunderland Royal Hospital who is brilliant. So there are a few options compared to two years ago. Well I'll speak to you soon and thanks again everyone. Phil x

Thank you so much everyone, and yes, Karen & Paul, I think getting in touch with Headway will add some pressure to Walkergate as the GP is getting exasperated with them. It's a viscious circle, with the joy and euphoria of Sharon making such amazing efforts to talk, and then the down side of her realising there is something very, very wrong and almost pleading for help, bless her. Unfortunately, I've been churning up all day thinking about her and feeling so helpless but I'll see what she says tonight. Speak to you soon. Phil x

Hi Everyone, Sharon is saying something virtually every time I see her now - 'Hello baby', 'I love you, baby' and I'm videoing them on my phone. However, at the same time there are some heart breaking moments such as last night when she said, 'Help me, can you help me?' and this isn't the first time she's said this. This is very hard to deal with and is really getting to me as it's so wonderful to hear her talking but she's realising that there is something very wrong. Her GP has been onto Walkergate Rehabilitation Centre but has had no reply. I'm sceptical about them in view of the last time but I really think Sharon is crying out for help and something needs to happen now. I'm sorry if I'm a bit all over the place, but this is the moment I hoped would happen and unfortunately I didn't really think about how I would deal with it. Phil x

Excellent news Tisha, I'm so glad Tina is responding. Take care, Phil

Hi Tisha, I was given dreadful prognosis after dreadful prognosis to the tune of about eight regarding Sharon and it got to the point where I just expected to hear the dreaded news from doctors but deep down I knew my instincts. Trust yours. We were told that performing a shunt on Sharon wouldn't make any difference and she wouldn't make any improvement, ever! Now she's trying to talk to me every night after just over two years!! They don't know but they prepare you for the worst. Keep talking to Tina and give her all the support you can and she'll know you are there. It's a bit like waiting for the mist to clear. Take care, Phil

Hi Tisha, If it is any consolation to you, my Sharon was written off about eight times as 'zero recovery' as she suffered severe brain damage to both sides of the brain. These days, even though she is under 24 hour care, she is talking to me every day; words, phrases, and sometimes whole sentences and she's getting better at it each day. She is very much there, even though she has a very long way to go. The doctors really don't know what will happen but they tend to prepare you for the worst. In your case, the fact that Tina is responding is really amazing. However, she will have long sleep periods as her brain will be recovering from a major trauma so don't be too worried if she sleeps a lot. Take care, Phil x

Hiya everyone, Sharon's doing well; she's attempting to talk regularly, bless her. Early this week I went in and she said 'How are you, are you alright?' as she would normally. I asked her how she was but I didn't get a response as I think she comes and goes between the confusion. However, I suddenly realised what she had said on my birthday April 13th; I did hear the word 'birthday' but couldn't make out the rest. Anyway, when I got home the other night, it dawned on me that she had said, 'Are you not going out for your birthday?'. Sometimes it's difficult to make out what she is saying and other times it's quite clear, but somehow I managed to remember the tone and phrasing and pieced it together from there. We're still waiting to hear from the GP regarding the Neuro Specialist at Sunderland hospital. But my main concern is that Sharon talks intermittently depending on how tired she is and this would probably be deemed as random even though she does talk in response to me. Still we'll see, take care everyone. Phil x

Hiya everybody, Sharon's continuing to amaze - she was suffering from a kind of hard burn/trapped wind last week when I popped in during the day, but when I popped back about three hours later with my Mam, she was absolutely lathered (sweating) and hadn't stopped, the poor soul. So the only thing I could think of was to do the baby thing of lifting her upright and rubbing her back. Well, this worked temporarily until she said 'higher!'. After about six or seven times, an aching back on my part, an outburst from her with the word 'burp' in it, she finally settled down relaxed, calm and absolutely knackered bless her. My Mam was thrilled to bits! Anyway, tonight she had a bit of a coughing fit, her head was cradled in my arm and I was given those wonderful words 'I love you', three times! That cheered me up no end on my first day back at work! Wonderful. Take care, Phil x

Hi Everyone, I'm now sorted out with a new car so things are a lot easier. I took my Mam in the other night who hadn't seen Sharon since the beginning of January. Sharon wasn't in a good mood at all and was lying on her side and saying things I couldn't make out. My Mam actually picked out the word 'lying' in what she was trying to say, so I re-positioned her so she was lying on her back. Her mood changed straight away to calm and relaxed as she was now comfortable. My Mam was over the moon that she had heard her speak and managed to understand what she was trying to say. I just hope she is able to steer through all the confusion and manage to comprehend things all the time as opposed to some of the time. She's fighting away bless her. Speak to you all soon. Phil x

Hi Everyone, Strange day today, it's two years since Sharon had her SAH but what's made it stranger is what happened last. I was asking Sharon to turn towards me on the left side of the bed when she started saying 'Am bla, am bla' and it didn't take a rocket scientist to work out she was saying 'I'm blind'. The thing is I've heard her vocalise this same phrase for the past six months or so and I feel so stupid for not understanding it earlier. I suspected that her sight was pretty much a big blur but last night hit me very hard even though yes it's very positive and a direct response. I told her that the problem was the mental image and the brain connection and eventually she stopped frowning and perked up. But I feel so sorry for her and really for not picking it up months ago. Also I'm without car at the moment and I have to leave at a specific time to catch the Metro home which means that like last night when she was gearing up to do something I had to leave. Well, must gobble my tea down and catch the Metro so I have a decent amount of time with her. I will sort a car out very soon but it's p*ssing me off. Take care, Phil

Hi everyone, Sharon has been very tired this week although she has been awake every time I've been in. But last night, I basically told her she had to try to speak more than just out of the blue and at least attempt to make some kind of sound every day. Bless her, she then proceeded to lift her head and make sounds from her throat for the next five minutes or so, even though she was really tired. It was very intense and at the same time quite emotional. I am so pleased for her and at the same time I feel so sorry for her. Speak to you soon, Phil

Thank you all so much for your warm and caring words, I'll keep you posted. Thanks again and take care, Phil x

Thank you Elaine, it is absolutely incredible feeling even though I'm saying to myself 'steady on, there's still a long way to go'. Sharon was always a very determined woman and what happened the other night was all her own doing, bless her. Yesterday I was absolutely at work!! I just floated around the building on automatic pilot. A lot of emotions that you suppress come flooding back like a tidal wave! Since it all happened, I've scoured the net for any kind of indication, time-line that would determine whether Sharon was improving, going in the right direction, to no avail. At some point, I will write about my own experience - things to watch for - so that others can at least have some kind of indication and not be left in the wilderness. Thank you all again! Phil x

Thank you all so much, but when I think of it she's been building up to something for a while. It could quite easily have gone into the bag with umpteen 'maybes', but the words 'as well' made it a direct response. She probably tried to say a few things last night as she was making a right racket vocalising most of the time I was there but she made it loud and proud bless her. I'm still floating, and I've just come back from seeing her tonight and I think she probably whispered 'Phil' - she's incredible. My brother Marty and his wife were over from Australia a couple of weeks ago and they said a 25 year old woman who suffered exactly the same complications as Sharon, suddenly spoke to her Mum after three years. And then my sweetheart does this... Still a long way to go but isn't she something! Phil x

Hi everyone, I hope you are all well; I've been rushed off my feet and haven't been on in a while. Sharon spoke last night. Yes, SHARON SPOKE LAST NIGHT. I'd been in with her for about an hour and 15 minutes, she had been vocalising and coughing and out came the words, 'I LOVE YOU AS WELL'. A direct response to me saying 'I love you' God knows how many times. This past week or so I'd noticed she'd began to swallow which is directly linked to the vocal chords but I wasn't ready for what happened last night. My head is spinning and I'm very much overwhelmed. She has a long way to go but this is a major step in the right direction and she's done it all herself, bless her. I'm keeping my feet on the ground though, but my head is spinning and her words have been tolling like a bell in my head all day. It's coming up to two years this March and this happening is just incredible. I'll speak to you soon I'm on my way back up to see her tonight. Phil x

Hi Sharon, I've been well busy recently so I'm just catching up on things. It sounds like your on the emotional roller coaster with your Mum at the moment. I'm so pleased that finally there's psychologist taking the reins and proposing the appropriate treatment your Mum's needs. But keep positive, the more time goes on, the moments of doubt about your Mum's recovery increase, but it's all anxiety and even I have to remind myself to take things at a day at a time. The physiotherapy that Sharon was meant to receive was basically a visit from a therapist who wandered in, took one look at her, and walked straight back out again. So there's an absolute storm brewing here! Take care and take it one day at a time. Phil xxx

Hi Claire, It's great to hear someone go through so much and come out the other side, you should be proud. My partner Sharon suffered exactly the same thing and now resides in a nursing home, bless her. Great to hear from some one like yourself. Phil xxx

Hi Joanne, I've just read your post and I'm so sorry for your Dad and my thoughts are with you in what is a truly emotional time for you and your Family. You are in great company here, there is a wealth of information and support which help you through this difficult time. Phil x

Well done Yasmin, it just makes me wonder what my sweetheart Sharon went through the day it all happened. It brings back the memory of seeing her wheeled through the corridor to the theatre for her operation - very sad but she's still here, bless her. Phil

Welcome Chills, You've found a great site with wonderful people. Take care, Phil xxx

Hi Sarah, Sorry to hear about your Mum; my partner had her SAH in March the year before but she survived and I'm grateful for that. I live in the North East and can only speak from my own experience with Sharon, but it depends on your Mum's condition. Sharon was transferred back to the local hospital from Newcastle where she had her operations. The local hospital assessed her condition and suggested she should be assessed at Walkergate Neuro Rehabilitation Centre. She was here for two months and at the end of the assessment the results were not good as they weren't at Newcastle. She's now in a nursing home three miles away. I'm currently pushing for a physiotherapist which the Stroke Unit at the local hospital have refused. From what I can gather it is a funding and resources issue together with the assessment prognosis which determines whether or not they will do anything. They are accountable for their actions and if a patient has been given a bad prognosis then they won't put themselves in the 'firing line'. It is an awful situation and you must feel very frustrated but don't take any sh*t, dig your heels in. Many people have been given the 'that's it' verdict and have made remarkable recoveries over time and that's what keeps me going with Sharon - I see things in her that a doctor won't see at all. I would keep battling with the local hospital as they are the ones that will determine where your Mum goes - with Sharon Newcastle were ready to send her to a hospital determined by our post code which is miles away!! The 'local' hospital is ten minutes away but has a different post code - it really is that stupid sometimes. Ward 6 at the local hospital was superb and they really took pride in the care and attention they gave Sharon and were responsible for getting her to Walkergate. I don't know about the situation in your area but keep digging your heels in. And you've found the best place for support and advice - someone here will know something, but feel free to ask anything about anything. My heart goes out to you and your family. Phil xxx

Thanks for your reply Ann, I think it was a hospital not a hospice - Sharon's Mam told me about it so maybe their was a little confusion. Here is the link to the story on the ITV website: http://www.itv.com/Lifestyle/ThisMornin ... fault.html Phil xxx

Hi Everyone, I've just read about a man who was on This Morning, ITV, whose wife was dying of colon cancer. Apparently, she paid for drugs that had been denied to her by the NHS, and consequently when she was admitted to a hospice and passed away within a few months, the husband was presented with a bill for thousands of pounds. This issue is something of a worry as the nurse at the home where Sharon is, has contacted the GP to try and get a physiotherapist. If this fails, we will have no option but to pay for a private one. You can imagine the anxiety within the family after hearing about this poor man. If anyone has any advice please post it here. Thanks. Phil