blueday

OK..........Nita you have been programmed in to see you on More 4. Fame at last! (please send me your autograph....many thanks !)

Hiya Zoe, thankgod your son is ok, but really well done to you.best of luck with richard at haywood.in many ways we are similar as i was taken for assesment at headway who specialise with my problems. i wish him luck too.

I came across these articles……with a difference. We all qualify as Survivors so I thought to share these personal experiences with our team. I found it powerful stuff……different from my own experiences, I’m sure different from your own but however it strikes you, we can all learn as we rebuild our own lives. www.freewebs.com/nikki-jenkins/ As you can see there is a lot of information for us all. I recommend you read through ‘My Haemorrhage’ ……it took me some time to get through it over a cup of tea. One of the things I learnt was……”What Doesn’t Kill You Makes You Stronger”.

when people here had a sah followed by the operation to stop the bleeding followed by their stroke......did any others have seizures?

Hiya Graham Many thanks for your post. As we are aware and from talking to others anti depressants are quite common for SAH survivors. I have always resisted any tablets that i take over a long period of time. But at this point now in my recovery i have learnt that I have hit the wall so to speak, now I am in the vortex going down the plug. I have been depressed for many years but as you know always put on the the right face you can disguise things and i have tried hard. I am to see a Neurophsy.... (something) about anti derpressants and anti convulsants. I have tried to get a job for years with no success so now i will try anything to get my life back. What i mean to ask is what is Cognitive Beahavioural Theraoy. I do have understanding prolemms you could go even further and call them learning difficulties so i should know about Cognitive Behavior Therapy.

is anyone on regular medication after their SAH or for depression.

Just one more addition. One more little waifer On the subject of Aphasia. the extent of confusion when using words, language even the bigger word ... Communication. We have all enjoyed the General Election haven't we? (arms may be twisted for some!) Brown, Cameron and Clegg..(just laid down alphabetically to be unbiased and politically correct) Without question each one is a qualified communicator.Take your own pick which you did when you voted! The use of language is a gift, so donĺt take it for granted. One day it can get you voted in too. I enjoyed listening to each one...I may well be a bit confused, but that is my excuse. I should have done a "Poll" on the best communicator, speech maker, use of language. Letĺs face it. it affects us all in our lives.It's a close thing for me. not quite sure we have the best communicator as our Prime Minister. Now I can lay back and say..."History will prove the winner". With my own disabilities in Language having Aphasia. I can be guilty of constantly moaning about words, moaning about forgetting words, moaning about memory even moaning about my own comprehension. Now I can lay back again...when I mispronounce or get words wrong I pass over to Officer Crabtree, another qualified communicator as he gets the words over for me. Enjoy the wrung wirds.

Many thanks Leo, Tina, Vivien and JayKay.....you were all exactly right. I asked someone with loads of experience dealing with Strokes, Aphasia etc. Aphasia is the.... "extent of confusion "dealing with speech and language etc. (numerology, memory and words) So many thanks to you all......you all Win the Prizes! So now I can close this page. Now it's official..... I am confused But remember...."you always were my favourites" "Nice to see you...........to see you NICE!"

Hiya Zoe, If I understand you you are OK looking after your husband Richard who has had a SAH. All I can tell you is that I have been to rehabilitation. I do not know about your Haywood place. I was at Kings College hospital for two months after my brain haemorrhage, after that I was sent to rehabilitation. I have asked my partner what had happened and how I was there. As I undersatand I was very similar to Richard if not exactly talking forgetfullness with depression etc but funnily enough my leg problems are with my right leg.My partner has told me going to rehab was not a choice, she was not asked I had to go for 4 weeks all I can tell you is how it went. It was good and helped me on the right track. You are with a group of people in the same position so you can learn what is wrong and you want to improve. My rehabilitaion centre was a secure place for safety. Every day there is a regime….if I rememmber like this; 8am-Bathroom Washing and breakfast 9am- Physio 10am- Speech therapy 11am- Doctor usually short with a small break 12 am- Psychiatrist Lunch 1pm- Memory group etc I wont write out the whole list as I take up too much space, but you get the feel of it. The whole day was registered until your last appointmet 4- 5 then dinner until 6pm where you coulsd watch tv and realx or talk. Most went to bed about 7pm till 8 pm. I did more work on reading calling friends I tried to write but I couldn’t. I make it sound like a prison but it is not. the nurses were great. Many times I was the only one still up at 9 pmwatching tv and I was a smoker before I SAH so I went to the garden to smoke and think about my own position. When it was quiet I used to help or talk to the nurses….so I was as helpful I could be. little things you learn and as the end I used to make tea and coffee for the nurses as they could relax too. I was in bed by about 10 pm waking until 7pm a bit.In the beginning its like being a child they care for but they helped me so much They started me off who I thank for them. It has been 3 years ago now still working on me .memory.cognitive understanding.reading and writing etc. If I am accepted again at the brain damage clinic as it is my last chance. If I am accepted I will be there as a resident for 3 months I will grab it straight away for my learning difficulties.You can see him and visit ans see the improvement. If it is too much they find different ways for him and let him rest. There is a regime and rules but it is not a prison.If it makes sense to you or if you have questions or want more then e mail me as I will tell you everything I have learnt for Richards help and improvement. I did this by reading you, undersatanding you and communicating with you. 3 years ago you would not have not seen thisfrom me without rehabilitation. Good luck.

Many thanks for that Liz......

OOoops..........that's me then. Nobody else mentions Aphasia....now,what was I doing again?

Good Moaning Team...I know I should have said Morning.but I prefer it and it suits me more to be Moaning ! Many thanks to you all for taking the time and effort answering my question. I think you are all on the same lines degree of word disturbance quoted from Leo. I don't know if it is a complete answer myself..if I learn something about it I'll pass it on to you, but many thanks and quoting from Tina Everyone else that follows....'You Know Who You Are' Points make prizes - what do points make? - Prizes!...... Well, I did use the Prize word ! It was a very close thing almost a tie as all your answers were on the same lines and You get nothing for a pair. Last night at 8 pm I did the draw. 5 names were placed in the tub. I should explain that my Angel had answered me too. The draw was done by total randomness to keep it fair as I put in Angels name...as it was mixed, I can now announce the winner of the Prize is........Angel (applause) Points make Prizes..she has won the keys to the Pink Bentley!!!!!!!!!! (just after I have Won the Lottery) Second was Leo (more applause) as she was the first to answer on the right lines. She has won (the picture of) a Rolls-Royce with David Beckham as her personal chauffeur!!!!! Tina, Vivien and Jaykay are Winners too..their Prize is? Wait for it. as additional Celebrities they have won a Free drink at any time between 6 pm and 8 pm at my local Pub... not counting Bank Holidays or Christmas or New Year...(please read the small print) More than Welcome! It could still be a big night if you play your cards right Many thanks. Nice to see you, to see you Nice!

Thanks Vivien............. I will ask a Consultant one day, and I'm sure he will come out with your answers team.

Good answer.........I wonder if it has anything to do with the bleeding. But no prize yet....many thanks tho.

Don’t mind me as I talk to Mr. Hyde….. Mr. Hyde…..I remember quite well the day you joined me! What a pleasure meeting you……NOT! I was at King’s College Hospital at Denmark Hill. I had had a brain operation to coil my aneurysm to prevent further internal bleeding in my head. It was a successful operation as all I had to do was to recover from the op. Yes…. I was a bit drugged up to keep me still and resting but all I needed was some time before to be released. I was in intensive care as they are always concerned about follow on Strokes after Brain Operations. Every single day my Angel visited me…either by Train…£8 ticket during the afternoons or by car in the evenings….use of petrol and parking costs. Over the 2 months I was in there it cost her, as she was working too, £480 is what she invested on me. Many thanks Mr. Hyde making it wasteful In intensive care I was fine so to speak…..talking to her OK,”Hiya Angel”…how are you?” “Can I have some tea?” etc “See you tomorrow” I was released from intensive care after 5 days then to the High Dependency Ward on Stroke Watch then after 10 days and no stroke they moved me into a Neurological Ward, after another 4 days Mr. Hyde joined me! She visited me again. “What moon under next week up over”…..pardon she said. “Leg’s car’s hands over” I repeated………it made no sense to her….”See it blue underneath houses paper write”….she was somewhat upset. Giving me the paper and a pen I filled the A4 page complete just like this: asdf prnhgs ccbntrs xxlmpdfg smvccs trfghjklmn ztydfghjkm frtyytcdfgh cvb nmlksrdt yhgfdscbl cnb ytrsdf vbnm sdfgh klhgfdwwb……etc Perfect letters in line after line until I had filled the whole sheet…and she did notice there was not one vowel (aeiou) saying to my sister who was with her “Houston…we have a problem….!” at the moment they didn’t realise what had happened, they were just concerned…very much. I have been told that at the time there was an Algerian patient who had befriended me was sitting opposite me who also had an operation…..he told them “ Check him out – I think he’s had a Stroke” My Nurses at the time had not noticed. After my Angels concerns and protests the nurses agreed they would have me MRI scanned again. Later it was confirmed – he had a Stroke with Aphasia. Welcome Mr. Hyde! Just one more question if this is read….. “Has any other had similar experiences?” OK I got it wrong …two questions. “I have been labelled with Aphasia. Other stroke and SAH survivors can be like me, get words wrong, forget things etc even fatigue, so why am I labelled Aphasic when they are not” Just a question for my own interest. Prizes will be given if someone can educate me. Many thanks. Have a good day y’all…..if it’s not good……make it Perfect!

I hope some may have enjoyed “The Four Candles” which I included the link for a variety of reasons. Initially….just for the humour, no harm in that. When people are more relaxed and happier I feel they are more receptive. Just like me, for me to learn and improve and recover I have to be more receptive. If I am down or depressed my learning and recovery scale is lower. From my scale 1-10 my input is 2 or 3/10, when I have my own attention for learning….my scale is 6/10 +……so no harm in humour for anyone and is more productive. Yes I enjoyed “The Four Candles”………why? Listening Receptive Language ---- Understanding and Comprehension (was it humour) ---- Concentration ----- Sociability ---- Expressive Language (the subject) ---- and some Memory Improve my enunciation ---was it Four Candles -----was it Fork Handles……! So in great humour I got some benefit from it……sadly I failed the Memory as I asked myself the question: “What was the name of the well known comedians?” I must know… I spent an hour on it Barker and…? am I right or wrong….was it George Barker? Richard Barker? Barker and…..? gosh it drove me crackers. Even now as I write I don’t know! Thanks to Wikipedia I had to find it. I was close, on the right line concentrating too much on their names….. they were commonly known as “The Two Ronnie’s”…..Ronnie Barker and Ronnie Corbett….. if I had said Barker and Corbett I would have been pleased, sadly not! ‘Corbett’ had escaped me totally. So in little things I learn….tomorrow I will ask myself again, what was their name? Most frustrating at times! Also as I wake up every day over my tea…I ask myself…”what did I have for dinner last night”…..was it rice, or potatoes etc…..if I get it right then I ask myself, “At what time did you eat?” was it 7 pm or later….! Gosh can be frustrating – at 6 am I go back to bed…still thinking about it…..”What time did I eat…..?”. Today I’m happy…”The Two Ronnie’s !” Ronnie CORBETT and Ronnie Barker…………..! Incidentally…..today is Thursday 6th May 2010….. So welcome to “Yvone”, our newest member.

With Aphasia any patient can be considered Mild / Moderate/ Chronic with Speech and Language problems, but when understanding language when receiving or expressing language for me it is fascinating so other words are included like Cognitive Comprehension, Learning, Memory, Understanding Concentration, Planning/Organising, Problem Solving, Motivation/Initiation,Word Finding, quite a list. Compare this list to other ‘normal’ unaffected people. Some are talented with Mathematics…some are not. Some read quickly…some take time to injest the words. Concentration…..sharp and quick – include and affect them with fatigue….mind wanders asking for repetition to take it in. Compare this to Stroke and SAH survivors is it any different? I let you answer your own questions. I want to give you three examples whose life has been affected. I know some out there will remember what I am talking about or seen it too. 1. London Report News (one month or so ago, I think) the article was about a male man around 50 years old, his profession was a ‘Painter and Decorator’ prior to his SAH and Stroke with Aphasia. Needless I paid attention. He admits that he was not an Artist other than twiddling drawings when he was at school. (who didn’t) After his illness he had become a recluse, unemployed and suffered with depression. He started painting. It helped him. Your own opinion how talented he was as an artist is your own choice. I saw it; I would say a good artist. Didn’t all grab me….but I saw his talent. He painted everyday… on walls on canvas…constantly. Himself was his own critic. Painted so many pictures the T.V Company covered him at 6 o’clock prime time. Where did his new gift come from? Was it just his own rehabilitation? I will think more about that. 2. The child with Autism….was not sociable, did not talk with learning disabilities. His parents could not cope with him so he was put in a Home for Autism sufferers. His treat at the Home with a group of Autistic children were taken out. In a coach taken to a famous Manor house, led around by the Warden and volunteer supporters. Showing those kids well known and grand rooms, lavish and exotic….(not like my own home). There were ropes around an antique piano…..’Do not touch’ said all over it. That caught his attention…..he curled under the ropes and sat at the Piano and hit the keys. The Warden, understandably went to remove him as the volunteers called him out. After hitting the keys a few times…… he played the antique Piano. More so than you think….he was talented, as if he could play a concerto. How? At the home he had learning disabilities….had never had a piano lesson in his life! In silence at the Home his pleasure was listening to his ear phones…in those days I suppose something like a Walkman. They let him complete playing his concerto (can’t remember what it was)….even the Warden. At the Home he did have Piano made available to him. Don’t talk to him….just listen! 3. The old Whicker’s World…….remember them. This is an old one, may well be in black and white. Covered a programme about a well known multi-millionaire whose name escapes me. Had been in big business for years, lived in a pressurised world. Houses all over the world, his passion for relaxation was sailing his yacht. Not the type you buy for a couple of grand when second hand. Well he had a Stroke….. a big one. His live was saved as his wife was called in. He is still alive but you’ll never see him walk again….she was told. Needs constant care. As he was released from the hospital in America I think. He was released in a wheelchair. Had loads of problems. Couldn’t talk or walk and eating was a problem etc etc. Taken home all he saw was his loved yacht. To compress this after the years and his own rehab….he did walk again….he did feed himself again and slowly he did talk. He was interviewed by Alan Whicker….slowly he explained to him he re-learnt everything from the opposite side of his brain……the right artistic side of his brain did the work of his co-ordination left side. His greatest pleasure was taking his wife out again on the named after her on his yacht. He had been an accomplished sailor…in his later life he was an accomplished Survivor! So if or when you meet someone with Aphasia, I know you are all educated in SAH and Strokes and experienced with this. They are not stupid…..they are not ignorant either. They are in rehab, as they aim for something every day. This link below explains mistakes….explains misunderstandings. Even ‘Normal’ people are guilty of it too!

Yes Sally, you are indeed more than Welcome to be here.... I quote yourself: "I am amazed there are so many of us out there and yet it's been so dificult to find someone who can understand me." Well, you have found a group of people who do understand you ! This site is just like an extra arm for us all. It is alive and 'Active'....just like us. Doors are open 24 hours, never closed even on Christmas day. Somewhere to work....somewhere to learn.....somewhere to recover......somewhere to chat...somewhere to laugh, and of course most of all, somewhere to understand you. Most pleased you found us all and joined because we know you will enhance this group. So I say 'Thankyou' to you.

Welcome to the BTG. Yes your sah was quite recently..............give it time and take care

Karen many thanks for you inclusion and your time. You gave me loads to read…….which I will work through like an Otter (hey let’s build another bridge!) Many thanks for the Pituitary Gland article which is very interesting but complicated things that I don’t understand and big names in jargon loses me….but today I am an Otter! So delicate and complicated. Why didn’t the good Lord just give us a tap! Off and on…..I could fix that. One thing I have learnt is “FATIGUE” is a big word for us all in our recovery. I am working my way through of peoples individual experiences…..all 39 names!....Who was counting (erm…I did lol). Stunning really how we all shared and deal with. I do have that problem so I will add my 40th name, but many thanks for compiling and working with that all and finding it for us all. In the future I will have to put forward a sensible promotion to yourself, as “I had a Dream”. Something on the lines of a Reunion…. a thankful collection (there I go…what is the word?) a Meeting, Gathering of survivors….Strokes and SAH’s hopefully a meal evening, hopefully at the Grosvenor - London or like or elsewhere. Surprise it has to be properly funded as many of us are at different levels, some not working some part time working etc. and money is tight. The objective is……the survivors a slap on the back, meeting and making good friends, but more important in many ways its knowledge and information to the Public, mainly the younger one’s to be aware how many Strokes there are each year. Knowledge is information and a protector for the young ’uns. Karen….somebody will have to make a ‘Speech’ to the assembly (so start working on it lol!)….there’s always a thought you do have ‘bogbrush’ lol. Incidentally his nickname should be elevated now…. ‘Basilbrush’ ‘bog attendant’ ‘bogtechnic’…… Ah yes ‘Technical Director’. Second thoughts nahh! He’ll push in for a rise or a new Company car! As you all know I am just a ‘Gypsy type’ right now living at the BTG for my rehab, but I bow to the BTG for giving me the tools. Today’s Inspirational Thought........ This very morning in your recovery Look up to the Skies And aim for the Stars. Even though you cannot see them. If, things don’t work out or fail You are at the peek of the highest mountains. Tonight ponder the Stars again! See their shimmering light and shine. Enjoy as they twinkle…. just for you! Their Lights will show you again what you missed and failed. Tomorrow in your recovery Aim for your Stars again! Everyday until you Win…and touch them… Shine with them…enjoy them.. Don’t hide or pocket them As you are at you’re Best…recovered. Think on…. As you walk and talk, smile and laugh with your friends or lovers think on again In a quiet moment look up to your Stars You Special Survivor…. In your private moment look up smile and think as you certainly know, The Stars shine and shimmer Joining others journeys For the world’s Survivors! PS. Sorry if I rambled and went on too long The reason is… It’s a long way to go……to my Stars! @blueday hnc (otherwise anon.)

I am having second thoughts about developing this ‘Aphasia’ page. In my recovery I try to learn more about my disabilities……how to recover……how to strengthen…how to walk…. how to be balanced and sociable in this world. Am I doing the right thing? as my anxieties increase. I sometimes forget that other people read this and it’s natural to think…”Hey, I felt that” - “Have I got that!.” At times reading Doctors books is the worse thing, after ten minutes you got so much wrong with yourself. This is for information – you have to be balanced in your approach and keep yourself healthy This is more a blueday for me today but I hope you get the feel of what I am trying to say get the ‘gist’ is a good expression for me. I will let Dr. Gerald Chodak doing my talking. http://www.youtube.com/watch?v=6h7Frkj96yM&NR=1 P.S If i put in too much information then please tell me and i will stop. Many thanks.

Hiya Jaykay, You said your Mum is still having Speech Therapy 4 years later......same as me. Did your Mum have an SAH like you? Do you think it is hereditary? In our family when my Mum was mature she had an aneurysm in her stomach…….and my Grandmother had an SAH. I pray that I’m the only one in the family that inherited it………if I did, it could be a coincidence? I had problems when I was a boy at 9 years old. I think they will write me off soon……..I can’t think of the euphemism. They can only do so much. I may have the opportunity to be accepted at a Specialist Therapy for Disabled people. It covers three months residential therapy, more intensive where they teach you other skills and hopefully some employment. I think they work you harder in many ways but things sound exciting for me. Speech and Language therapy, Physiotherapists for my leg hopefully after my appointment with the Wellcome Trust whether they can identify the damage to my Pituitary Gland. These were the questions they asked: Presenting Difficulties (Please mark any of the following) Cognitive Memory Understanding Concentration Planning/Organising Problem Solving Motivation/Initiation Word Finding Behavioral Aggression- Physical -Verbal In appropriate Behavior Alcohol / Drug Abuse Details ………………………………………………………………………. Communication Expressive Dysphasia Receptive Dysphasia Dysarthia (Aphasia) Physical Difficulties ………..etc Under the Cognitive list of 7 entries I had to underline them all…! They also do counselling into Depression, Mood Swings and Anxiety and Emotional things which all effect me too. They think my Pituitary Gland effects that, which I am trying to learn more about it and research before I go to the Wellcome Trust. One thing if I do go it gives my partner a well earned change and rest……lol. We are just talking about it but three months is a long time away……you do get breaks but she’s worried about me already.(Worried about me getting breaks too….lol) So if I go quiet for 3 months……..you’ll know where I been.

Incidentally Karen........isn't it time to elevate Keith's nickname?

Thanks for sharing that with us.....It is interesting how the hands and bolts got this together and despite your own illness and recovery your family (Incorporated) rallied around and all can share this success. At what you achieved is great......I'm sure you hear quite a few good stories about other peoples achievements and recoveries but I'm sure that there have been great successes at BTG you don't even know about. Thanks to you and your team !!!!!!

Hi Leonie…… and thanks for your input. What was I saying?.......ah yes. That was a bit of a joke as in the mornings I am at my best, by afternoons and evenings I deteriorate….but I know more about myself now so I can deal with things more successfully and socially. I have tried to disguise and hide my personal disabilities, not as well as I think at times. There is a cycle in life which is quite natural when you look at speech and language etc. A child has to learn develop and form. Natural ageing, forgetfulness, some confusion not as strong etc… all natural. In this site one of our major support groups is Subarachnoid Haemorrhage injuries, but we are all in the same pot….Strokes..Trauma and Brain injuries and others. We are the Survivors whose life has been shunted to one side. We must all be positive because life is still good for us all, at times just take a different route to find our happiness and contentment. I make the comparison to us as a Car. Any Car needs oil…..maintenance……spare tools to keep it running sweet and reliable. Maintain it and it will take you anywhere and safely. (just like my old Nissan….130,000 miles and still running!). So ‘Maintain’ yourself! Leonie (nice unusual name)…..you said you “struggle with words sometimes, especially when tired.” You are in good company as we all understand. If we were on a scale 1 to 10 ….mild – moderate - severe.. we can all find our own place. There are 518 members here at BTG with 118 active members I have discovered there are two people with Aphasia which at the moment which leave us in the 0.259% (who else is good at Maths….is that correct?) so the 400 non–active members are just sleeping…….WAKEY…WAKEY ! I am sure they will have more input when the time is right for them too. As a sideline, when this site was first created (was it Karen…no names were mentioned at the Home page) by a fellow Survivor with personal experience whose life was shunted to one side too. The tools were given to us to help ourselves to rehabilitate us…..makes this site unique as it is an Active site. You do your own writing, do your own reading do your own comprehension and understanding…..strengthen yourself for your own life. I included this Wellcome Trust clip which I found interesting…..may not apply to you all but maybe in sections. If anyone is interested just let me know. http://www.fil.ion.ucl.ac.uk/WTfilms.html Wellcome Trust - Talking Heads That’s my rehab today……if some one asks me how long it took to write this….I’d lie….lol !