Wednesday, 11 September 2013

11th September 2013

The recovery continues, with continual visits to the clinic at Elche, where they are concentrating their efforts on his ability to walk, and to reconcile any problems he has with the functions of his brain. He has received Botox injections to his lower left leg, and to the sole of his left foot. This is to relax the tendons which have “forgotten” what to do. He has also had medical tape put on his left leg from his knee down to and under his left foot. The idea with this is to make the foot fall flat on the floor. These efforts will take time, but first results are promising. Steven has been given many “brain” exercises, such as Sudoku, and other logic problems. He also has to speak in English for at least an hour with the nurses, to improve his vocabulary. Having built up his weight last winter, over the summer he has lost half a kilo, and is now 65kilos. But the staff at Elche are happy with this. Steven continues to live his life as best he can. He is generally happy, and copes admirably with his disabilities. But what he cannot do is shake off the pain. He can try to be busy in the hopes of “forgetting” the pain, but it isn’t easy. He recently had an appointment to see a Doctor in the hope of getting some sort of benefits from the Social Security. This is getting to be difficult due to the precarious position of the Spanish economy. This report is what we wrote for the benefit of the Social Security team for evaluating Steven’s disability. Some of which may have been written before. He suffered catastrophic injuries which still affect him today. He had extensive in-operable brain injury which has affected him in so many ways, and he and we are still learning what extra problems he has. The most difficult part of Steven’s life is convincing people that he has serious problems with pain management. It is felt by Steven and us as his carers that people seem to think that because Steven looks so well, that everything is fine. It is not. Steven’s biggest problem is just that, he looks so well, but he has a multitude of problems. He does try to cope with his disabilities but it’s difficult. The brain damage was, and presumably still is, extensive, affecting every part of his life, from morning to night-time, and even when asleep. His life is almost intolerable. He has to concentrate on whatever he is doing. If he gets interrupted, he has to stop what he is doing, and re-plan his next move. This is most important. He cannot do two things at the same time, or as we say, he cannot multi-task. In other words his mind is in constant turmoil, having to think about everything he does and react accordingly. He cannot feel the whole of the left side of his body. He only feels pain, and very little control. The concentration pain diminishes his ability to do almost anything. This is foremost in his mind. He has to deal with the pain at the same time as he tries to control his body. For a simple example he cannot clap his hands together in time. He describes his left side as wooden, or not belonging to him. He cannot dance, despite practicing, because the left side will not react as quickly as the right side. He finds it very difficult to speak, both in formulation of words and sentences, but also in maintaining a continuous conversation. He has to think about what he wants to say before he can say it, even then he has to often pause during speech. He was able to translate from Spanish to English to Spanish very quickly, but now he cannot do it as fast. He cannot interact in a group of people all talking. He was able to translate Spanish or English music to English or Spanish words, in order to sing-a-long, but now he cannot. He cannot concentrate on any particular subject for a great length of time, he is also very forgetful. If circumstances do not meet his expectations, he gets distressed, angry, and depressed. He feels hungry but finds it difficult to actually eat food. He cannot control his body temperature particularly when it’s cold. Also his hormones are not correct, he sweats very easily when warm, meaning that he has to have several showers. Working in bars he was accustomed to loud noise, but now he finds background noise irritating. He especially gets very upset when he hears children crying or screaming. This is a reminder of the screams from children and adults at various hospitals. This does not mean he does not like children, he does. It is the crying he does not like. Due to these sights and sounds experienced at various hospitals he gets upset easily when seeing people in a similar position to him. Steven finds it difficult to sleep due to the constant pain throughout his body, just catching his toes on the bed sheets causes pain. He also has nightmares of the accident and what he has had to experience during his recovery. Waking in the morning is difficult and slow. Often when he wakes up, he realises that this is his new life, having dreamt that he was living an ordinary life, this is particularly distressing. During the early months of his recovery he was in a state of horror, unable to tell us of his pain, problems, or feelings, and even now he is reminded of the pain, inconvenience, and embarrassment of this every time he shuts his eyes. He has had one hip joint replaced, but the pelvis is permanently twisted. This causes pain and discomfort whether sitting, standing, or walking. He has had two operations on his left elbow, but that still causes him severe pain. He is suffering pain in his left ankle, and this is believed to be excess calcium growth, which will probably mean another operation. This is a new problem and is yet to be investigated. He is uncomfortable with the look of his tracheotomy scar and is considering “plastic surgery”. He has permanent muscle pain down mainly his left side from his neck downwards, probably due to lack of use whilst in a coma and subsequent long recovery in hospital. He still does not have full control over the use of his left foot, particularly his toes, because they regularly curl under his foot when walking. He used to experience severe pain every time he tried to put on his shoes. The pain now is at least manageable. He has terrible scars and muscle wastage on his left leg from the accident and the insertion of a metal pin in his lower leg. He is a very bad passenger in a car. There are many drivers who drive so badly, or leave it to the last minute to stop at junctions, or especially drivers who fail to stop at red traffic lights, creating almost a state of panic in Steven. He can walk, with the aid of a walking stick, but only in a straight line and with no obstructions such as people, street signs, animals, high wind, or rough surfaces. This is the most difficult part of Steven’s problems. He has to be constantly vigilant. When walking he has to tell each and every part of his body to move in the correct manner. He has to monitor the way he moves every part of his left side in particular before he puts his foot down. He is constantly aware of his surroundings, and has to plan each move ahead. Any deviation from this plan can cause problems such as stumbling. He cannot put his left foot flat on the floor, because he has little or no control over his foot. When walking he puts all his weight on the right side, because he cannot feel his left side. He cannot walk and talk at the same time. He has tried to walk without the aid of a walking stick, but this causes problems, because other people assume there is nothing wrong with him, and this sometimes results in people bumping into him or expecting him to move out of their way, causing him to lose balance. By having his walking stick, not only does it give him support where needed, it also shows people that he has a mobility problem. He stumbles almost every day, and falls over about once a week due to loss of balance. He drops things on a regular basis, breaking many items of crockery, or spilling food on the floor. He has had to endure a vast amount of dental treatment being required, due to accident damage, and neglect when he was in a coma and having a tracheotomy. Steven’s speech is affected due to problems with his bottom jaw, though not broken was no doubt dislocated or jaw muscles affected. He has a problem with his short-term memory, forgetting very recent events, sometimes relying on messages on his mobile ‘phone. The latest examination by a Neurologist revealed that due to the brain damage Steven has hyper-sensitivity, this means that all of his pain is exaggerated. A simple gentle touch of his skin can cause irritation and even pain. He has recently started a new regime of medicines plus Botox injections to his left foot. These will allow the foot muscles and tendons to be more flexible and hopefully help alleviate the pain. A later Psychiatrists report written for the Social Security stated that Steven will never have the capability to study, remember facts or details, and would never be able to work. All these facts are now in the hands of the Social Security. It would be nice to get a positive result, and bring a small amount of closure. Best regards Terry