phil13 Posted May 21, 2008 Share Posted May 21, 2008 Hi, I'm Phil and I've just found this site. I've sent a PM to Karen explaining 'my story' which involves my partner Sharon. She had an SAH (grade IV) on 10th March 2007 and survived it, but she has severe brain damage. She is in a nursing home three miles away which makes it easy for me to visit her as I do every day. Her cousin met a woman who went through exactly the same treatment and was given the same prognosis (dreadful), but after a few years made a full recovery. I live in hope that maybe Sharon might be one of those lucky few, but regardless of the long term I will visit her every day because she would do exactly the same for me. I haven't had a chance to read a lot of the posts but I'm so pleased I've found a place I can talk about my sweetheart and share thoughts with people who have experienced SAH. Phil Quote Link to comment Share on other sites More sharing options...
jess Posted May 22, 2008 Share Posted May 22, 2008 Hi Phil and welcome to BTG. Anytime you want to know something just ask, and yes there is still a chance your partner may get better and I am hoping she does aswell. You never know it takes along time for the brain to heal. Anyway welcome to the group. Jess.xxx Quote Link to comment Share on other sites More sharing options...
Tina Posted May 22, 2008 Share Posted May 22, 2008 Hi Phil A warm welcome to you, I am so sorry, my heart goes out to you, I cant imagine how you must be feeling, bless you. I pray to that Sharon will make a full recovery, God bless you, and give you the strength you need to get through this. Thinking of you, Take care Love Tinaxx Quote Link to comment Share on other sites More sharing options...
tennissmithy Posted May 22, 2008 Share Posted May 22, 2008 Hi Phil, Welcome to this wonderful site. Sorry to hear your story about Sharon, I'm hoping and praying that Sharon will make a very good recovery in time. If you have any questions, please feel free to ask, we are such a friendly bunch someone will be able to help you. If you need a good moan or to share a good day, thats what we are here for Take care and try and look after yourself too. Laura xx Quote Link to comment Share on other sites More sharing options...
Skippy Posted May 22, 2008 Share Posted May 22, 2008 Hi Phil Welcome to the site and the family. So very sorry to hear what Sharon is going through, it must be awful for you both and you have my sympathy. The brain is a very complex muscle and I don't think even the Docs know enough to be able to give an accurate prognosis. I was told once that if I think of it as breaking my leg takes six to eight weeks, maybe longer, to heal then the brain is likely to take 10 times longer. I'm sure that you going to visit her everyday is giving her all the encouragement and hope she'll ever need to make a good recovery. Feel free to asake anything you like or have a good sound off or laugh - don't feel guilty about it. My thoughts and prayers are with you. Love Sami xxx Quote Link to comment Share on other sites More sharing options...
Janet Posted May 22, 2008 Share Posted May 22, 2008 Hi Phil Welcome to BTG so sorry to hear about Sharon it must be realy hard for you at the moment but don't give up hope. As some of the others have already said it can take a long time for the brain to recover from such an injury. My thoughts and best wishes are with you both. Janet x Quote Link to comment Share on other sites More sharing options...
Louise Posted May 22, 2008 Share Posted May 22, 2008 Hi Phil A very warm welcome to the site. And ditto what everyone else has said and you look after yourself because thats just how it is..... But it is amazing what people can do, the doctors with their technology & the patient with will power & knowing that your there will help, they thought I would be around 80% disabled I'm not...... Take care wishing Sharon all the luck....... Louise.xx Quote Link to comment Share on other sites More sharing options...
Vivien Posted May 22, 2008 Share Posted May 22, 2008 Welcome Phil and I hope this site helps you and Sharon as much as it has helped us all Quote Link to comment Share on other sites More sharing options...
Holly Posted May 22, 2008 Share Posted May 22, 2008 Hi Ya Phil, I have just read your post, and I think a big hug is winging its way to you, bless you. Your Sharon, has a really special person in you. They say time is a great healer, and I do hope this is the case for Sharon. Please, keep popping in, and anything you need to share, off load, or just rant about, we are all here for you. Much hugs, H x Quote Link to comment Share on other sites More sharing options...
Karen Posted May 22, 2008 Share Posted May 22, 2008 Hi Phil, Welcome and many thanks for sending me your story. I'm hoping to put it on to the front page asap ..... I'm having internet probs at the minute and it's like watching paint dry. I'll PM you or e-mail you, once I've done it. You'll find plenty of friendly support here ...... As some of the other guys have said, the Docs don't always know the final outcome with brain damage and we've had a few cases on this website where people have been given a bad prognosis, but with love and support from their family, have gone on to prove the medics wrong, so never give up. How old is Sharon? .... Quote Link to comment Share on other sites More sharing options...
phil13 Posted May 22, 2008 Author Share Posted May 22, 2008 Hi Phil,Welcome and many thanks for sending me your story. I'm hoping to put it on to the front page asap ..... I'm having internet probs at the minute and it's like watching paint dry. I'll PM you or e-mail you, once I've done it. You'll find plenty of friendly support here ...... As some of the other guys have said, the Docs don't always know the final outcome with brain damage and we've had a few cases on this website where people have been given a bad prognosis, but with love and support from their family, have gone on to prove the medics wrong, so never give up. How old is Sharon? .... Thank you all very much it's great to feel some real support - this past year I've battled on looking after her son, Edward who is 11 years old and coping very well. Sharon and I are both 45, her birthday is two weeks after mine; 4th May, mine is 13th April. She has her moments when things happen out of the blue, such as a month or so ago I went in and said 'Hiya sweetheart, are you OK?' and I heard the word 'NO.'. She can't talk so I tend to put these things down to coincidence but at the same time I can't help but wonder. But thank you all again - I got to eat my tea and pop across to see her so I'll speak to you all soon. Phil Quote Link to comment Share on other sites More sharing options...
Guest pam Posted May 22, 2008 Share Posted May 22, 2008 Hi Phil Welcome to our group. I am so sorry to hear about what has happened to Sharon.I see you are both from the North East as I am. Its very early days yet for sharon and and there is so much time yet for recovery...... My cousin had a SAH in September 2006 and after discharge from Newcastle General Hospital (which is the same hospital where my brain aneurysms were coiled) my cousin was transferred to a nursing home,however, she made progress in that nursing home and she is now back home, living alone and managing well, although she has outside help coming in. Dont give up hppe make sure she continues to receive physiotherapy - this was stopped in my cousins case as they said she had reached her potential, when it was resumed she came on leaps and bounds which eventually got her back home. Take things slowly,the brain takes a long time to heal.Sharon has already proved how strong she is by surviving the SAH. pam , Quote Link to comment Share on other sites More sharing options...
Cal Posted May 22, 2008 Share Posted May 22, 2008 Hi Phil, Welcome to BTG. I also am the significant other of the person who has suffered an SAH. My thoughts and prayers are with you both. Jim was able to come home after 11 days in ICU but it still was and still is a long journey. It is so hard to take care of yourself at the same time when you are worrying and loving someone so much to see them so ill. If you have any questions this is the site to ask them. Take care, Cal XXXX Quote Link to comment Share on other sites More sharing options...
bogbrush Posted May 23, 2008 Share Posted May 23, 2008 Hello Phil and welcome to behindthegray You've just joined a great family! Regards Keith Quote Link to comment Share on other sites More sharing options...
phil13 Posted May 23, 2008 Author Share Posted May 23, 2008 Thank you so much Pam and Cal, You've hit the nail on the head Pam, I was discussing Sharon's progress with her family the other day - we were told 'that's it' and she doesn't get physio - we all agreed that Sharon needs physio in order to have any chance of recovery. The general feeling is that they've been a little quick in righting her off which seems to be the case across the board from what I've read. And I have to adjust her 'boots' because she moves her legs which has resulted in her left foot 'pointing' ballerina style. She isn't an 'empty vessel' for want of a better term, last night when I saw her she was p****d off and showed it - she hates the splints and the nurses have commented that it's a real 'battle' to put them on - she groans and 'spits'! (I've caught quite a few in the face!!!) I know she probably doesn't remember 'us' from before but she always responds to me. There is a difference in her from even three months ago, I know these are tiny signs but in Sharon's case and where she is at the moment, they are big steps. When you know a person's 'lust for life' and natural determination you interpret things that 'professionals' don't have any idea about. Seeing Sharon grimace and trying to move speaks volumes as far as I'm concerned and I've conditioned myself to not read too much into the things she does. Cal, I am have moments all the time where I wonder if I'm just 'seeing things' but I resolved myself to the fact that no matter what does or doesn't happen I will always be there for her because she would be there for me. I must dash now, I have a four hour drive to Leicestershire with my students - they're in the final of a competition. I'll speak to you all tonight. Thanks again. Phil Quote Link to comment Share on other sites More sharing options...
Shanti Posted May 23, 2008 Share Posted May 23, 2008 Hi Phil Just read your post with tears in my eyes. Welcome to BTG, the site where we all help each other through the bad and the good days. Phil, look forward to your posts and updates on Sharon's progress (and to hear about Edward too). Sure we all feel for you so much, most on here thank goodness are the lucky ones, we came out the other side remarkably unscathed considering the seriousness of SAHs. I hope and pray that Sharon improves with time. One thing we have all remarked upon is that when dealing with the medical profession you have to get stuck in, not take no for an answer, keep at 'em until you get what you need for Sharon. Look forward to reading your full story. In the meantime, take care, keep positive. Sounds like you're doing a grand job and deserve a medal. Big hug Lesley xxx Quote Link to comment Share on other sites More sharing options...
Guest pam Posted May 23, 2008 Share Posted May 23, 2008 Hi Phil I am pleased we have all been able to help you a little. Re the physio, yes you may need to fight for this - in the case of my cousin, they were absolutely determined she had reached her potential - my cousin also has osteoporosis (exs spelling I mean brittle bone disease) and because of this needed to wear a caliper to help her walk and that was before the SAH, but she was very independent then, continuing to work part time and then (before SAH) drove her disabled car).The SAH caused paralysis down her left side. I am guessing that because of her existing problems my cousin was perhaps harder to rehabilitate through physio from the SAH than she would have been if she didnt have these other problems. The physio's were actually marvallous, but the physio was stopped (I wondered if it was funding) and she was told that she had reached her potential and I too thought it was too early to come to this decision. She ended up having to pay for private physio , who came into the nursing home.when this proved she hadnt reached her potential (as she was progressing well) the NHS Physio was reinstated. She was in a wheelchair in the nursing home. Today she walks around, in her own flat, yes she needs a zimmer frame to help her (largely due to the osteoporosis and the effects of fractures from the osteoporosis incurred before the SAH)but she is doing well. Have a safe trip to Leicestershire pam Quote Link to comment Share on other sites More sharing options...
Louise Posted May 23, 2008 Share Posted May 23, 2008 Hi there It makes my blood boil when I hear about medical staff righting people off, although I understand that they have other people who may seem to have a lot more hope, sorry if that’s the wrong term I’ve used if they’d written me off so to speak well I wouldn’t be doing this I don’t think they should give up hope or stop physico I would say for myself in the first year although I improved it wasn’t till about year 3 that I noticed & found that I was improving a lot more….. I can imagine your moments of wondering if your seeing thing but then you know the person which gives you more of an insight than the staff. Take care Louise.x Quote Link to comment Share on other sites More sharing options...
Sasbo Posted May 23, 2008 Share Posted May 23, 2008 Hi Phil Welcome to BTG where you're now in the company of a fantastic group of people who will all be behind you and showing great encouragement and, above all, can identify with what you and Sharon are going through. Wishing you and Sharon lots of love and day-by-day improvement. Above all, have faith in your beliefs and knowledge of Sharon and don't take no for an answer..... Sarah xx Quote Link to comment Share on other sites More sharing options...
phil13 Posted May 23, 2008 Author Share Posted May 23, 2008 Hi Everyone! I've just got back from Leicestershire, Hinkley to be exact, and I couldn't wait, knackered as I am, to get to this board and I'm overwhelmed with the wonderful things you are all saying. (Neil Diamond is singing 'Love On the Rocks' on the TV as I write - great song! Sorry.) Louise, I had the 'marvellous' task of dealing with the consultant at the hospital who informed me, 'We don't want to prolong Sharon's death any longer, so we won't be keeping her on the respirator or treating her any longer'(I kept this from her family until she was 'in the clear'). At the same time, I was advised in so many words to accept and give up on her - I came away seething but my sweetheart proved them wrong and was kicking all the way; literally. She still had her memory then, and it was one of the most emotional times I've ever experienced in my life. I went in one evening and asked her if she remembered the house, our lovely garden that she virtually lived in and nurtured, and the adventures we'd have in our camper; she had a tracheostomy but the words 'I love you' were perfectly formed in her mouth, it was unbelievable! These days, I'd have to say she probably has no memory of those times but she knows me when go in. Pam, we are thinking of paying for private physio, but we are going to have a meeting with the Stroke Rehab Unit, who monitor Sharon's condition, and push for physiotherapy. I don't like the way Sharon's foot is starting to point forward due to the limited movement in her legs; it may be the fact we need but I know about the battle to get things and sometimes I wonder if it is down to funding. Bogbrush, thank you so much; you were up ****** early this morning!! And thank you Shanti and Fifibucks, we are fed up and feel she's been dumped even though the nursing home are great with her but they only do what the care pack says to do. I'm so grateful to you all - you have really lifted my spirits. I haven't had much to eat today and this glass of wine is making me p****d!! So Goodnight and I'll see you all tomorrow. Phil xxxxx Quote Link to comment Share on other sites More sharing options...
bogbrush Posted May 24, 2008 Share Posted May 24, 2008 Hi Phil Glad we were able to lift your spirits. I've put your story on the site and it can be viewed on the homepage and in the Read Articles/Your Story section. Make sure you find some time for yourself. You'll be no good to Sharon if you make yourself ill. Regards Keith Quote Link to comment Share on other sites More sharing options...
phil13 Posted May 24, 2008 Author Share Posted May 24, 2008 Thank you Keith. I've rummaged around looking for a picture of Sharon; unfortunately the best ones are hard copy pictures but I've got this one which I edited.Sharon.JPG[/attachment:224x2qza] Yes, I'm taking it easy this weekend - yesterday was a long haul trip with quite a few traffic jams! Speak to you soon. Phil Quote Link to comment Share on other sites More sharing options...
Karen Posted May 24, 2008 Share Posted May 24, 2008 Lovely photo Phil ..... Sharon looks as though she has a definite mischievous (spelling?) twinkle in her eyes..... Sharon has good family to come home to and I'm sure that will make her fight ..... I know that's how I felt .... xx Quote Link to comment Share on other sites More sharing options...
phil13 Posted May 24, 2008 Author Share Posted May 24, 2008 Thanks Karen, yes she not only has a mischievous twinkle in her eye, but also one the loudest, guffawing laughs I've ever encountered. We once had to go to the hospital about fertility - I won't go into details - but I arrived from work and she was already in with doctor and I heard her laughing down the corridor! The doctor was advising us to try harder in order to have a baby and Sharon was in her element saying things like 'Don't worry we'll get it in hand!' and shrieking with laughter. The doctor wasn't amused but his assistant was choking!! Thanks again. Phil xxx Quote Link to comment Share on other sites More sharing options...
Tina Posted May 24, 2008 Share Posted May 24, 2008 Hi Phil What a lovely photo of Sharon, you are both in my thoughts and prayers. Love TinaXX Quote Link to comment Share on other sites More sharing options...
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