Information Directory for Survivors, Their Carers and Family
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Coventry & Warwickshire Cardiovascular Network Recovering from a Stroke – Information Directory for Survivors, their Carers and Family This is a draft document 1 Who is this booklet for? This booklet has been written by the Coventry and Warwickshire Cardiovascular Network for people who have had a stroke, their families and carers. Its aim is to provide information about your recovery and how you can learn to live with and overcome the after effects of a stroke. The directory in the back of the booklet contains contact details to give you and your family the choice to explore the many local and national support services and agencies available, once you have left hospital. It is not intended to replace any of the information you may have been given by the team of stroke professionals who have been looking after you, but it is hoped that it will help you through the initial challenges you may face when you start rebuilding your life. Not all the questions you may have can be answered here, but it is intended that this information will prompt you and your family/carers to ask questions and point you in the right direction to get the help you and your family/carers may be entitled to. Don’t worry if the booklet seems a bit overpowering; it isn’t meant to be read in one sitting! We hope that it will be useful to browse through when you feel well enough and that your carer and family will find it helpful too. ----------------------------------------- Other booklets in this series, produced by the Coventry and Warwickshire Cardiovascular Network, and available from the hospital where you were treated are: • Information about Strokes This booklet was written to help people who have had a TIA (transient ischaemic attack) to understand what causes a stroke; to know how to deal with a suspected stroke and to get advice about the lifestyle changes that can be adopted to help to reduce the risk of having a stroke. • After a stroke – Early Treatment and Care 2 The aim of this booklet is to explain exactly what a stroke is and how it can affect different parts of the body. It also details what happens after admission to hospital, the diagnostic tests done, what the medical terminology means, early treatments, the long term medication used, and the staff who will be involved in the care and rehabilitation of the stroke survivor. ----------------------------------------------------------- Recovering From a Stroke Strokes usually strike without warning and can be life altering; leaving you and your family/carers with many issues to overcome. These issues will need to be resolved to enable you to live as fulfilling and independent life as possible and help to relieve any worries you and your family may have. In the first days after a stroke, there may be swelling and inflammation in the brain, but this should settle down in time and some of the symptoms you have may then improve spontaneously. Most people find that they do have some spontaneous recovery, when abilities that have been lost start to come back, as other areas of the brain compensate for the injury caused by the stroke. This process is quickest during the first few weeks after a stroke, but it can continue for a long time. Indeed, people say that their improvement can be life-long. One thing all stroke survivors have in common is that life will be forever changed in some way. In addition, everyone close to you, the survivor, will have to make a life- altering adjustment. This applies to all family members and good friends. The degree and success of your recovery can be directly related to the amount of support given by your close family/friend network. They, in turn, will need support to enable them to come to terms with what has happened and help you on your journey to recovery. However, please try to take life one day at a time. Try not to get disheartened if you feel that you should be progressing more quickly. Take pleasure in each moment of progress, and know that there is always room for hope. 3 Problems that may occur as a result of the stroke include one or more of the following: • Weakness or paralysis of one side of the body. This causes problems with walking if a leg is affected, or problems using an arm or hand properly. It is possible to be taught how to compensate for, or work around these problems, using equipment or aids for support if necessary. • Problems with balance, co-ordination and lack of awareness of one side of the body, may lead to a tendency to have accidents when trying to perform tasks and, importantly, to be unstable and fall. • Swallowing problems . These are quite common, particularly in the time immediately after the stroke, because the stroke may have affected the muscles involved in the process of swallowing. This can be dangerous as food and drinks may go down the windpipe into the lungs, instead of down the gullet into the stomach, when attempting to eat and drink. It would mean that the resulting coughing or choking could lead to the danger of developing a severe chest infection. A speech and language therapist or registered nurse does a 'swallow test' on all people who have had a stroke, before they are allowed to eat or drink. This is to make sure that swallowing is safe. If swallowing difficulties can be managed by having thickened drinks and softer consistency food, then the team would be able to give advice on this issue. If there is severe difficulty with swallowing, then liquid nourishment, passed into the stomach via a nasogastric tube, which goes in through the nose and down into the stomach, would be maintained until improvement is achieved. However, if long term help with feeding is needed then a special percutaneous endoscopic gastrostomy (PEG) feeding tube would be placed into the stomach. This is done by examining the stomach with an endoscope passed down the gullet and then inserting the PEG feeding tube into the stomach through a small incision (cut) in the skin and through the abdominal wall. Attached to the tube there is a small plastic disc which lies close to the skin to prevent movement of the tube and a small clamp or plastic cap which will keep the tube closed when feeding is not taking place. This procedure 4 would be done with sedative and local anaesthetic medication and on average takes less than 20 minutes. Bladder and bowel problems. After the stroke there may also be problems with bladder and bowel control that may cause incontinence, though most people will improve and regain control over time. In the meantime, there are products available to help to overcome these difficulties, together with practical techniques that can be taught. It may be necessary to have a catheter fitted if there are difficulties passing water. This is usually a temporary measure in most cases. Establishing a routine of regular toileting with the carer/family can help to prevent ‘accidents’. • Speech and communication difficulties. This may range from slurred speech, to difficulty in finding the correct words to say, or to being completely unable to speak. The ability to understand what people are saying may be affected and they may have difficulty understanding what is being said. The ability to read may also be affected and there may be difficulty with writing. There are therapists who will be able to advise and aids and training to help overcome some of these deficits, which may improve over time • Difficulty with vision . If a part of the brain that deals with vision is affected then problems may arise. For example, after the stroke there could be double vision, or loss of half of the field of vision, making it difficult to see anything to one side. This may improve on its own over a few months or an orthoptist will have optical devices to help to overcome these difficulties. • Hearing difficulties . These are really quite uncommon after a stroke, usually with, at the most, only mild hearing loss in one ear, as a result of damage to the temporal lobe of the brain. So deafness is not usually an issue. Rarely, there may be problems (known as auditory illusions) which make normal sounds seem unusual or loud. An audiologist would be able to advise in these cases. • Sense of smell . Caused by the stroke damaging the area of the brain that controls smell, it may also be linked with loss of the ability to taste. • Difficulties with mental processes. For example, there may be difficulty in learning, concentrating, reasoning and remembering. There may also be problems with recognising what are normally familiar day to day objects, e.g. what a teapot is and what it is used for. Day to day judgement may be 5 affected and there may be difficulties with putting thoughts into their logical order. These ‘thinking’ abilities are known as cognitive skills and the difficulties arise as the result of the stroke. The difficulties affect up to 75% of stroke survivors. An assessment by a clinical neuropsychologist will help to give greater understanding of how to work round some of these issues. • Tiredness. Fatigue can be a very real concern after a stroke, affecting both young and old alike. It may go on for some considerable time after the stroke, so it is important to have plenty of rest and accept that this is part of the recovery process. The family/carers must learn to take this into account, particularly when trying to support people to help themselves.