Daffodil Posted December 10, 2013 Share Posted December 10, 2013 Michael. Don't let the anger eat at you ,it's not good for you, but its very normal to feel frustrated like this and having a bit of fight as Tricia rightly says will probably help you. Keep your own records in an easily shared accessible format as time passes quick and things get forgotten and share the load of fighting battles and chose which ones are worth fighting. I read a book by the singer Edwin Collins wife which helped me understand how my family felt and had to act during my time in hospital. it details the struggles his family faced and it's called, Falling and Laughing. It's a hard read, I won't lie and might not be for you but he is now back in the recording studio after a very long slog so those battles on his behalf and asking of all the hard questions have paid off. My family had to have some proper toe to toe ,nose to nose run ins when logic and innovation seemed absent or just hitting petty bureaucracy and to be honest once I came round I railed against it too and still do. Hospital is a great place to deal with crisis and acute health issues but practicality and out of the box thinking can sometimes can seem an ocean away just when you need it most. Sounds like you will bring that to the table, I am sure once the big wigs have sat round too they will come to the same conclusion that it's fine to do acupuncture so view it as a delay for now and not a definite no. Hope they do. ( tricia, great to hear that you have all come such a long way, hugs a plenty this christmas ) Quote Link to comment Share on other sites More sharing options...
Winb143 Posted December 10, 2013 Share Posted December 10, 2013 Tricia Michael and All and my Daffs !! I was in ICU then moved to normal ward, back down I came with venticulitus. Then moved to normal ward yet again, back I came to ICU, this time with Sepsis. My husband and daughter no longer trusted staff, my husband and daughter decided to stay there all day. Shift work good family xx I am so glad my family were on my side !! I feel sorry for those who have no one to care for them. Chin up Michael and Family xx Love to All WinB143 xx xx Quote Link to comment Share on other sites More sharing options...
m150984 Posted December 17, 2013 Author Share Posted December 17, 2013 Hey Guys, My brother was moved out of ICU on Sunday and is now in a ward. He still wasn't moving much at all apart from the occasional small movements from his hand on his left side. We finally got permission from the new ward to go ahead with the acupuncture and had our first session this evening, It was quite remarkable. They placed about 8 needles in his head, 1 wrist on this right and 1 in the moustache area. The moved the needles about and he started making movement on his right leg and clenching his right hand. They then attached a tense machine to the needles and left him for 20 mins. when they come back they did some more movement of the needles and he lifted his left arm about half a foot in the air. After the session the Dr who performed the acupuncture said for a first session he was very positive in his initial responses. The also filmed this and will film every session. I'm over the moon, any movement would have been good so this more then we can ask for. Any help towards rehab was what we was hoping for. We have our next session on Thursday then again on Saturday Quote Link to comment Share on other sites More sharing options...
kempse Posted December 17, 2013 Share Posted December 17, 2013 Hi Michael, I've just read your latest post and am so pleased your brother is on a normal ward now and equally pleased that he responded so positively to the accupunture. That must have given you all such encouragement. I hope the next session goes well too. Keep us posted, Best wishes, Sarah Quote Link to comment Share on other sites More sharing options...
Super Mario Posted December 17, 2013 Share Posted December 17, 2013 The acupuncture seems to have had a positive effect and hopefully further sessions may bring an improvement in your brother's mobility and responses. Sending vibes to your brother in the hope that the treatment works. Quote Link to comment Share on other sites More sharing options...
iola Posted December 17, 2013 Share Posted December 17, 2013 This is such wonderful news. I'll keep praying.... Quote Link to comment Share on other sites More sharing options...
Tina Posted December 18, 2013 Share Posted December 18, 2013 Hi Michael that's really good news ! A big positive Lets hope the next sessions help your Brother respond even more. Wishing you all well. Take care. Quote Link to comment Share on other sites More sharing options...
Winb143 Posted December 18, 2013 Share Posted December 18, 2013 Michael, Great News, good job brother changed wards ! Keep talking and singing as it does help (Well it did me) I awoke singing to a nurse after shunt was fitted. poor thing. I hope it wasn't one of my Dads dirty ones he taught me when I was young. Onwards and upwards, good luck to brother xx All the best to you All xx WinB143 xx xx Quote Link to comment Share on other sites More sharing options...
Wem Posted December 18, 2013 Share Posted December 18, 2013 Wonderful news Michael. Hoping your brother sees further improvements from the next session. Take care, Wem Quote Link to comment Share on other sites More sharing options...
Daffodil Posted December 18, 2013 Share Posted December 18, 2013 Michael. That's really promising news and I hope the acupuncture continues to bring a good reaction. I imagine your brother feeling pleased with himself right now for lifting leg so high or possibly plotting his revenge on you for sticking him with needles. Seriously though a happy note of hope and possibility. Quote Link to comment Share on other sites More sharing options...
m150984 Posted December 20, 2013 Author Share Posted December 20, 2013 Hi Guys, After our first session with the acupuncturist the next day we had a lot of movement from both sides of his body and again another raised left arm, the movement on the right side is not as much as the left but there is movement. It’s so amazing that we have gone from barely no movement and him being in a locked on type of state to what we have gained in one session. Yesterday we had session 2 and it was pretty much more of the same, more scalp acupuncture and then some electro acupuncture. He responded well again to this and we had more leg movements. I haven’t been able to get to the hospital today to see if he is more lively yet as I’m finishing up work for Christmas today so have lots to clear. I have booked all of Jan off to sit down the hospital during these exciting times. We are doing the acupuncture sessions for 1 hour every other day and the acupuncturists are even coming in on Christmas day to do a session, they are the nicest people and so keen to help. We did tell them there was no need to come on Christmas day but their response was, we need to carry on his treatment. I think it’s a bit of a project for them too as they have never been given the opportunity to do this treatment in the UK, they are able to showcase what is standard procedure in China for patients with Brain injuries. We are visiting a rehab centre this weekend with the aim to getting him in there from mid-end Jan. They are also looking at taking out his trachy soon to see how he copes without it, they are a little concerned with he can swallow properly yet. We had a family meeting this week with the hospital where they told us what the next steps would be and also to answer any questions we had. When we asked why he wasn’t operated on they said the type and size of the bleed my brother had they felt that operating on him wouldn’t have helped and they didn’t expect to see him make it through that night, that was taken into account when making their decision. Today is 7 weeks since the day this happened and I would like to thank everyone for all your support and prayers over this time. It’s amazing the strength you can gather from people you hardly know and this means a lot. This has helped me keep positive share that positivity to my family members that haven’t had the opportunity to speak to anyone. We are still at the beginning of a long journey and the light at the end of the tunnel is far, but no matter how long it takes, as long as there is air in my brothers lungs we will keep on driving and I look forward to sharing a cold one with him once we reach the end. I will try and keep you all updated on our next sessions before Christmas. Thanks Michael Quote Link to comment Share on other sites More sharing options...
Karen Posted December 20, 2013 Share Posted December 20, 2013 Hi Michael, That's really good positive news! xx Quote Link to comment Share on other sites More sharing options...
Louise Posted December 20, 2013 Share Posted December 20, 2013 Sounds very positive... Quote Link to comment Share on other sites More sharing options...
Wem Posted December 20, 2013 Share Posted December 20, 2013 Michael, all sounds very positive. Can I just say that the love and support you are giving your brother right now is very moving. Your posts capture the very essence of what makes a good family a remarkable one! I hope you and your family manage to have some time for yourselves over the Christmas period. Wem Quote Link to comment Share on other sites More sharing options...
Daffodil Posted December 20, 2013 Share Posted December 20, 2013 I echo Wem's sentiment, Your love and affection For your brother is uplifting. I hope you all get to smile a little more than maybe the past few weeks over Christmas. The needle team sound just lovely and I hope the therapy continues to bring with it small acorns of change and hope in his recovery. Very best wishes to you , yours , him and his. Quote Link to comment Share on other sites More sharing options...
paul99 Posted December 20, 2013 Share Posted December 20, 2013 hi Michael im pleased for you and the family I hope and pray that things move on and there are positive vibes coming from everyone fingers crossed and good luck Quote Link to comment Share on other sites More sharing options...
Winb143 Posted December 20, 2013 Share Posted December 20, 2013 Michael, They might be small changes, but as long as your brother keeps moving forward it's progress no matter how small. It is good to have backup as most of us have been there and without family, well !! Also this site helps albeit venting our frustrations and helps our family when they do not know where to turn. My Daughter was helped on here when I was in cuckooland (as I call it). Keep the good work up. Best Wishes to you All WinB143 xx xx Quote Link to comment Share on other sites More sharing options...
Tina Posted December 21, 2013 Share Posted December 21, 2013 Hi Michael, such wonderful news, so happy the sessions are helping In my thoughts and prayers. Take care xx Quote Link to comment Share on other sites More sharing options...
Macca Posted December 24, 2013 Share Posted December 24, 2013 (edited) Hi Michael, sorry to be joining this at such a late stage, I haven't been on here for a while. One of the best pieces of advice I got when I first joined was that 'every journey starts with a single step'. It is so true. we often think about the person afflicted, but we also realise in this group that friends and relatives lives are affected deeply also. Your brother has had a major blow and the important thing is that he is allowed to recover in his own time. He is probably disorientated and confused as some of the others have said earlier and it will take him time to assimilate the enormity of events to date. When I had my SAH I was in a coma for several days and I had to be taught to walk and talk again and how to do every day tasks. Progress was very slow to start with but picked up over time. What I discovered from talking to others though, was that everyone goes at their own pace and that their achievements should be encouraged and applauded, no matter how slow it might seem to you. The brain is an amazing thing and can be very resilient. What you should do is be there for him, believe in him and not lose hope that his recovery will improve over time. He must be able to see and feel that hope in order to have the inspiration to keep pushing himself when he can. You've already started that process by coming on here - what you will note is that you are never on your own. The support you will get here is incalculable and is a great source of inspiration even in what may seem to be dark moments at the time. We've all been there at some point or other to greater or lesser degrees but understanding your problems is the point at which you will take that first step on the road to recovery. You've already made that step. Well done! Best Wishes Macca Edited December 24, 2013 by penny Paragraphs/line spacing inserted for easier reading Quote Link to comment Share on other sites More sharing options...
m150984 Posted January 12, 2014 Author Share Posted January 12, 2014 Hey Guys, I hope you are all well and having a positive start to 2014 I wanted to give you an update as so much as happened since my last post. Just over 5 weeks ago we was told that my brother wouldn't be going to rehab and the best option for him would be a home after his massive brainstem bleed and he was in a locked in state. As a family we decided to try out a method of scalp and electro acupuncture that I had researched on the internet as a last chance to get him moving again which I have mentioned in my last post. We started the acupuncture on 17th December and had the sessions every other day right up until today. During this time we have saw movement from the first session. Now his left side has got even stronger and more movement in the right side, which is his weaker side. My brother can now lift his legs up and down when sitting in the chair to strengthen these, when we leave the hospital he can spud us with a closed fist, and when his children visit he gives them the thumbs up to say he is okay. We get laughs out of him and now to when we are having conversations between each other. He still has his trachy in so we are not sure what the speech is going to be like but they have started to deflate the cuff for a few hours each day and they are very happy how he has taken to this. Yesterday at the end of his acupuncture session, he was having his needles removed and the needle he hates most above the top lip just under the nose he lifted his arm and took this out himself without a mirror and held the needle until we noticed. Tomorrow morning he is being transferred to Northwick Park Rehab where the acupuncturist have agreed to continue the treatment once a week. We have recorded all of the progress during sessions and want to make a mini documentary on how far he has come over the last month to show him when he is better. We owe the acupuncturist so much in the help they have given us and I can not wait for the day my brother can thank them himself. Over the past 2 days he has had various nurses that looked after him in NICU ward come and see him to say goodbye and they can not believe the progress he has made in such little time from when he left their ward on 16th December. Thank god we fought the hospital to allow us to use this alternative treatment otherwise we wouldn't be where we are today. Just wanted to give you all an update as we enter this new chapter of rehab. Has anyone been to Northwick park and what was their experiences there? Its a bit of a journey for us to get there as the drive is awkward but we will cope, Homerton would have been our first preference but due to his trachy they can not take him. Quote Link to comment Share on other sites More sharing options...
Super Mario Posted January 12, 2014 Share Posted January 12, 2014 Thank you for the update and it is wonderful to hear such positive news. May your brother continue to progress in leaps and bounds at the rehab hospital. Quote Link to comment Share on other sites More sharing options...
Winb143 Posted January 12, 2014 Share Posted January 12, 2014 Hi Michael, All good news then, your brother is a fighter. Thanks for update and hope your brother goes from strength to strength. Take care of you All xx Be Well Love to you All WinB143 Quote Link to comment Share on other sites More sharing options...
iola Posted January 12, 2014 Share Posted January 12, 2014 This is incredible news. He is on my prayer list. God bless. I Quote Link to comment Share on other sites More sharing options...
Daffodil Posted January 13, 2014 Share Posted January 13, 2014 That's such promising news, as you say a new chapter has begun with his move to rehab. Huge pat on the back for brother for his resilience and to you all for weathering the emotional ups and downs so far. Great to hear the acupuncture has helped. Can't help on the hospital front other than to say I was in hospital quite a way from home for many weeks and my family had a rota for who came to see me and when and asked friends who were nearby if they could be on hand for any ' pop ins' . So practically that may be something to try and work out if you can and make a weekly chart that your brother can see that explains who is coming in when etc. Quote Link to comment Share on other sites More sharing options...
paul99 Posted January 13, 2014 Share Posted January 13, 2014 terrific news so much for locked in syndrome I know of Northwick hospital but not the rehab unit so good luck with the move and the future please keep us up to date you have triggered my interest I would like to know more about the acupuncture if you have time take care and good luck to you all Quote Link to comment Share on other sites More sharing options...
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