I started trying to write a reply to stroke at 19, by Pablo's mum and its grown. I hope it helps. I'm 60 now and had my stroke at age 15 in August 1964 – 45 years ago. It was caused by a bleed behind my right eye. I went first to my local general hospital for a week and then to a hospital with a brain specialist, where I had a further week of tests. The decision was made not to operate and I was sent back to the first hospital, where I stayed for a month. Memorable events from among the routine are my 'O' level results coming through; a very kind , patient and knowledgeable blind man came to give me physiotherapy. His disability didn't stop him getting angry with the staff for not contacting him earlier. He felt I should have had help in the form of a sandbag at the bottom of my bed to prop my foot up and a frame supporting the bedclothes to stop their weight pressing my foot down. During my time in hospital, I recovered from being totally paralysed down my left side, to being able to use my left arm and hand and walk - my arm being clutched tight across my chest much of the time and walking being an inelegant shuffle. Looking back, I realise I was emotionally numb to the situation. Even now, I feel I'm looking in on someone else. I had been a violin playing, bell ringing, captain of the school under 15 rugby. Now all that was in the past. I was a different person. On leaving hospital, I spent a further 3 1/2 months at home attending outpatients weekly for physiotherapy. I was repeatedly told I was lucky as at my age I would make a good recovery. In January, I went back to school. I was taking 3 'A' levels, 2 'O' levels and catching up on the term I had just missed.This was the start of being pitched in at the deep end. I succeeded and got a place at university, studying Engineering. 3 years later I had a degree and started work. I worked until 1996, gaining a Masters degree along the way. It occurs to me there has been a contrast between the ease with which I have been able to get myself educated and the difficulty I have had getting straight answers, good advice, treatment and support on health issues. Things seem to be improving on these matters, but there still seems room for improvement. Throughout this time I suffered depression periodically and periods of extreme tiredness. When I sought advice, I was generally told something along the lines 'we all get tired/depressed from time to time'. The stroke was ignored. If I knew then what I know now....I would have sought work in a more understanding environment, though I'm not certain how easy that would have been to achieve. The jobs I had all assumed you were fully fit to perform them and no provision was made for disability. I hear of examples of individuals who seem to get work where their particular needs are met and there is an air of understanding, acceptance and support. I have to admit to feeling tentative about believing I could achieve the same for myself. I find it very difficult to trust that I will be helped into work and that support and understanding would still be there in the hard times. Much of the time my disability is not apparent and, while this is good, it does lead to assumptions there is nothing wrong, you don't have special needs. Now, I've not worked for 13 years and not working has given me time for myself. Looking back, I feel I was rushed back into life too quickly and couldn't find a way to stop. The issues around coming to terms with a new version of myself were never addressed. I have had a lot of conflicting advice, ranging from 'people have their strokes, get over them and go back to work' to ' you need to live life at a slower pace'. The emphasis in my experience has been on the former and I still find difficulty accepting thattiredness, emotional lability and other symptoms apply to me, because I was told so many times they didn't. People who have strokes as children can have greater difficulty identifying the changes. If you are in the middle of developing as an individual, it can be very hard to separate differences resulting from the stroke from developmental changes. Issues I've come to feel have a stroke foundation are how I find emotional situations extremely tiring and stressful situations bring out strong emotions which I find very difficult, if not impossible, to resist. If I get tired, I become prone to increasing levels of self doubt which degenerates into a loss of a sense of self. I now see I spent a lot of my working life in this 'lost' state. I should have been living a quieter, more controlled life. These are the reasons I choose to lead a quieter life now. I've recently devised a test for tiredness. It probably sounds ridiculous to need a test, surely we feel tired, when we're tired. Well I don't. I If I garden, which I greatly enjoy, I get a real sense of achievement, and find it easy to carry on doing more and more. Before the test, I would work to the point of absolute physical and emotional exhaustion and in extremes, need bed for 24 hours in a darkened room with no ability to bear even slight stimulus. Now, I stop every hour and make a cup of tea. If I can turn on the cold tap, which involves using my left hand and thumb, I'm OK and can go on to do more; if I can't use my thumb, I can't turn the tap and it's time to stop. I needed a tap test 40 years ago - and an environment that would let me apply it. Some stroke survivor's stories paint a picture of a relatively short period of difficulty and then a climb back to almost full functioning at the same level as before the stroke. This has not been my experience. I have made a good physical recovery and can when rested achieve what I regard as significant outcomes – climbing the near 3000feet peak of Cader Idris was this summer's. (It was followed by a day in bed – mostly sleeping.), but as I've said there are, always have been and always will be problems. It has often been difficult getting answers to questions, for example, now we have M.R.I. scans and a greater understanding of the functions performed by different parts of the brain, I have asked if it is not possible to get an indication of the likely impact my stroke would have on my functioning. The response was being asked 'what help I thought that would bring?'. By contrast, I have read other survivor's stories where they have been given this information as a matter of course and found it very useful, as I'm sure I would, in coming to terms with what has happened and accepting what the new version can do and what it finds difficult. A combination of knowledge of the implications of the physical damage and counselling to help one to come to terms with the change would certainly have helped me and I'm sure help those who do get such treatment. Unfortunately, I don't think everybody does. I think if I had been helped more in understanding and accepting the changes I would have worked longer – for any politicians reading this, it's cost effective. I would still like to work. I do work. I diy my house – it's an environment where I have complete control on what I do and how long I do it. I have a 'long suffering' who accepts the weeks and months it can take to complete jobs others would do in days and probably I ought not to be doing it, but I don't trust the system to understand and accept my limitations, so I limit myself to diy. I've gone on (and on) and better bring this to an end. My advice to anyone who has suffered a stroke is to take all the support you can get, demand more in terms of help and support, learn your new self's limits and stick at life. You can have a good life after stroke – it'll just be different.