Thursday, 7 November 2013

7th November 2013

Steven has tried to live life as normal, as much as he can. He is learning about his abilities and limitations on an almost daily basis. He recently tried two things. One was a day out at a local nature/animal park, where he discovered that his walking abilities are somewhat limited due to the pathways being up and down hills, and around many bends. The path surface was good, but the changes in orientation were difficult, and with few seating areas. A tiring day but with good memories. He also tried a holiday away from home with a friend. This holiday was in a rural area. The problem here was the reverse of the day out trip. The surfaces were uneven and with many unseen obstructions amongst grass. His friend, though able in his own way, was unable to help Steven in the way that he relies on us for his walking and manoeuvring. This resulted in Steven not straying too far from his lodgings, but he found peace and tranquillity in his surroundings. We give Steven credit for at least trying to regain an active life, but it’s only in this way that he will learn and ultimately accept his limitations. Every day to him is a challenge. Yet another examination by Doctors, and following discussions with Doctors of various expertise, it has been confirmed that Steven’s pain is coming from the messages being sent and received by his damaged brain. During tests, he is having high sensitivity to pain in places such as neck, shoulder, ribs, left arm, pelvis, left leg etc, where there should be little or no pain, and no obvious reason for pain. The Doctors agree that his pelvis is misshapen, and that even if the pelvis was adjusted by removing small sections of bone to help “line up” the pelvis, this would not stop the pain. It may help his mobility but not remove the pain, because the pain is not coming from the pelvis. Pain-killing medicines by their very nature, cause drowsiness, so Steven is trying several different medicines at different strengths, to find something suitable for him. We will investigate the possibility of some sort of operation or “gadget” that could interrupt the signal from the brain, but as yet, not apparently possible or available. This aspect of Steven is so difficult to explain to people. To look at Steven, no-one would ever think that he had any problems, but the brain damage was extensive as previously described. Remember, the prognosis in the early days was not very good for Steven’s future. Unfortunately from our own experience, there are people who, if they cannot see disfigurement, or blood, or bone, are unable to accept that there are problems. Best regard Terry

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