31st March2011

Hiya
It has been brought to my attention that I should more accurately describe Steven’s condition. I have been guilty of avoiding some sensitive subjects because I don’t want Steven to be embarrassed by good natured “mickey taking” when he fully recovers, and my position on this will not change.
Since Steven was brought here the doctors and physio’s have performed miracles, and Steven’s improvement has been immense. However he is still extremely incapacitated. Although my descriptions of his recovery are basically true, it seems that a combination of my poor reporting, and people’s perceptions, Steven is better than he really is. To me every improvement is a victory, even though they are so small.
Steven can now move between wheelchair and bed. First he has to push himself up from a lying position to a sitting position, a very difficult manoeuvre considering he has little or no strength is his arms. When sitting he has to start to stand but he can only do this with an orthopaedic boot on his left ankle to give him support. He then has to hold on to us during the manoeuvre, and we have to support him by holding him. He then has to mentally “ask” his legs to move in a shuffling motion. He has to consciously “tell” his legs to “lock”, and then to move in the correct direction. He occasionally has severe pain in his left leg, especially at night. This makes the shuffling motion more awkward due him to being reluctant, or unable, to put his weight on this leg to move his right leg. The best description is that he is learning how to walk again as if he was 18 months old.
Steven does not like the hospital gruel. So Pauline makes most of his food at “home” and takes it to the room. He can chew, but not hard foods such as tough meats or biscuits. He is fed from a bowl with a spoon. He has done this himself, but the results are erratic.
He has no strength in his arms and hands, to hold a spoon, or turn a page in a magazine. He can use a laptop, but due to his wayward fingers, many keys are pressed, but he knows how the laptop works, and does his best to correct mistakes. Keeping him occupied is sometimes a problem. He watches tele’, dvd’s, listens to music, play Connect 4, and even plays poker.
Steven’s throat muscles on the left side are weak, making it difficult for him to speak clearly. He also hasn’t yet mastered the art of correct breathing when speaking, making his speech slow, and in short monotone spells. He has retained all his language skills, even changing rapidly between Spanish and English.
He can touch his face with his left hand but slowly and with extreme difficulty, because of lack of movement in his left elbow. He still cannot turn over in bed by himself, but once comfortable, he can sleep well.
He describes the whole of his left hand side of his body as being heavy.
He has periods of depression from a variety of reasons, but mainly because he wants to work hard to get better, but can’t. These periods are awful, lots of crying, sleeping, and anger, and this affects us also. We have our own periods of depression, caused by the sheer anger of what happened to Steven, and watching him pushing himself so hard to get better. Steven just wishes he could flick a switch and it would be all over and he’s back to normal, but he’s been told that isn’t going to happen. Steven has so many plans for his “second” life, but we have to tell him not to dwell too much on that, but concentrate on getting better. There is no timetable to full recovery, everyone is different, but he has been told that his body is recovering fine, there are no obvious problems with his body, and that his brain is repairing itself after receiving so much damage. He has his own target of his birthday in late June to either walk confidently, or even return home. At times he has a good mental state. He can remember all manner of things, from how to make cocktails in a bar, to programming computers, and using electronic gadgets. But then at times he can forget the date, or what he was told earlier in the day, yet again, remember that later.
We give him very little information relating to the accident or his earlier treatment, because we want him to share his experiences with us later, rather than recall what we’ve told him. We have told him little pieces of information, but only to explain to him how different he is now to what he was then, in the hope that he can then see for himself that he is improving.
His physio’ and doctors tell us that Steven works hard in the physio’ lessons, thus explaining the state he is in when he returns to his room, tired, thirsty and hungry. He has put on a good amount of weight, and his legs are beginning to put on muscle. All his wounds have healed. No dressings, just regular cleaning and massaging with oils.
We have complained so many times about Steven’s tiredness, and the pain he suffers in his left leg. This all came to head one morning this week when Steven was incapable of going to physio’. After several visits by different doctors, Steven’s medicines have been changed, again, and we just have to wait for them to take effect. At the start of the week, Steven was a little depressed, and he finally said it was because he was frightened of the tests he sometimes has with the doctors. We and the doctors had to explain to him that the tests weren’t tests to be passed, but just an assessment of how he is progressing, and the results would determine the next level of treatment. Steven was relieved at this.
Our duties in looking after him have changed, some things have gone, only to be replaced by others. Steven is truly working so hard, and enjoys any sort of help and support, whether from us shouting encouragement, or the receipt of personal messages.
Best regards
Terry