Jo was less tired today and managed several stands using the rotunda from her armchair in the front room, which is quite low. She resists placing the left hand on the rotunda, but it does help her balance and I have observed, when it is on the frame, there are flickers of movement as the arm tries to do its bit.
In the same vein, when I placed the table with her lunch in front of her, requiring that she pull her legs back, she pulled the left leg back instinctively.
Jo came home for another long stay today. She is tired today as a result of four night-time urinations, one of which required a change of linen. The consequence of this was that her left leg was once again floppy, not making the effort to position itself correctly during rotunda transfers. The left side of her mouth was also drooping more than yesterday. No more pots of tea after 16:00!
Jo got up at 19:00 and we had some tea, returning to CICC at 20:30. At 21:00, when we did a simple transfer on to the bed, her left foot was moving in concert again. Obviously the dynamics of muscle movement in shuffling are better developed. They have just started using the rotunda for all transfers so we should start to see some improvement from now on.
Jo came home with the occupational therapist to assess how things were. She did a transfer from the chair to the bed and managed quite well. As they discovered, Jo needed to use the rotunda to do the reverse though, making night-time urinations a problem.
They did observe the same apparent movement of the left leg in concert with the body during transfers.
Jo rang me to make sure I was coming to CICC for her physiotherapy session today. She seemed much more positive than ever before.
During the session she managed several stands and two steps on the left foot, the latter of which, crucially, she was aware of.
Jo was had a hospital visit today. The doctor agreed that the nerve pain was probably due to the returning movement in Jo's left leg, although she did observe that tolerance did develop to the Gabapentin over time. She doubled the dosage to 600 mg and prescribed 20 mg of Omeprazole to protect her stomach from the aspirin.
Jo's left hand is much looser and less prone to form a claw. Hopefully, the new pain control regime will see the progress we saw in her left leg last week continue. My parting comment to Jo was, "We're getting there."
Jo was up by 08:30, seemingly having slept well despite not having a sleeping tablet last night. The physiotherapy session was aborted because of the neuropathic pain in her left leg. I did notice when Jo was transferring to the plinth that her left leg wasn't dragging, that she seemed to be making some attempt to move it in concert with the rest of her body. Perhaps this new neuropathic pain is symptomatic of returning movement?
The pain in Jo’s left leg seems abated by the Gabapentin but not obliterated, making the leg draw up in a similar manner to the fingers of her left hand. I had assumed it was merely the return of pain previously masked by the Gabapentin but must admit I have not observed this behaviour before
Jo came home for a day visit today, having got up at 08:30. We managed to get her on the commode using the rotunda. At 14:30 we transferred her to the bed I had made up downstairs for a siesta. We did one transfer from the wheelchair to the commode and two transfers from the bed to the commode so eight stands. At 18:00 Jo got back in the chair and we had some tea before returning to CICC at 20:00, at which time Jo got into bed. During the transfers Jo's left foot was trying to make helpful movements but the movement was too small to have any effect. Still, it is returning and getting stronger.
We forgot to get Jo's Gabapentin to take home for lunchtime and by 20:00 Jo had vice-like pain in her foot and knee, indicating that the neuropathic pain is still there and that she needs to take it every eight hours.
Jo was up at 08:30 for breakfast, only going up for a siesta at 13:30. The physiotherapists came at 14:00 and got her up. It was a mixed session. The assistant manipulated Jo's hand on the bed and got her to raise it to her nose and up to the ceiling, using the right hand. This proved difficult at first, as the elbow joint is stiffening up. Jo has not been doing this exercise, which is bad.
Down in the gym they got Jo to stand four times, each time from a progressively lower position. Jo did not have her heart in it and the stands were perfunctory at best, as if Jo was doing it for our benefit, not her own. The physiotherapist did get her to step twice but this was perfunctory too, no more than a transfer of weight to her left leg.
On the bed at night there was a lot of movement from her left leg and toes, all of it instinctive rather than controlled but things are definitely waking up. Some of the movements were in response to input, so Jo moved her foot up and back to help me pull her sock off. Once again a movement she professed not to be aware of.
In the evening, after I had massaged the foot, which stimulated small movements in the toes, Jo drew her left leg up herself, twice. After that she couldn't do it any more and said it was like this, she could move it and then it would go inactive again. I think this is “normal” and to be expected. She is definitely making progress.
The physiotherapy session saw another milestone with Jo standing and taking three assisted steps, one of which saw her lift and move the left leg. This was physically and mentally exhausting and Jo went back up to her bed afterwards for a well-deserved rest.
There is a certain lack of confidence that may be holding Jo back as she is afraid of falling but that is countered by her own insouciance. Just before Jo took those steps she was standing, leaning on a plinth on her right side to steady herself. Then, without thinking she raised her right arm and scratched her nose, standing and balancing all on her own without any problem.
Jo went to the hospital to have a new splint fitted for the left leg. While she was there she related that she had moved her toes upward on the left foot, only ever so slightly but definite movement. I saw the same movement when we put her into bed, a definite upward movement of the toes and an advance on previous movements of the whole foot or leg.
Jo was visibly tired today and the physiotherapy session was limited in scope by that and the swelling in her left leg. The physiotherapist massaged the left foot and hand and advised Jo to keep it elevated as much as possible.
Despite her tiredness Jo did manage to transfer from the chair to the bed without a sliding board and managed to shuffle up the bed on her own. The physiotherapist said she could see an improvement with every visit and said she doubted Jo would need a rotunda by discharge time. The physiotherapist asked her to wiggle her toes but there was no joy. Jo said she can do it but not to command, something that the physiotherapist said was to be expected, functions returning unconsciously at first, only becoming conscious with time.
Jo was up in the chair at 08:00 as they needed to take the heart recorder off. The physiotherapist got her on the bed at 14:30. Jo went down to tea at 17:00, getting back into bed at 19:00. Getting back into bed Jo again did not use a sliding board and shuffled up the bed on her own, something she said was easier then the sliding board.
Despite there being little real progress today I have a feeling of something approaching normality returning. I had a dream this morning where I was speaking to Jo's ontologist about the prognosis for her recovery, which they thought was good. I had no idea what ontology was and so looked it up in the dictionary upon awakening. “The metaphysical study of the nature of being and existence.”
Jo was asleep when I arrived at 15:30, having been in the chair from 08:30 until 13:30. Her ankle was elevated on a pillow and the swelling of the last few days was much reduced. The doctor's diagnosis was that this was part of her condition, so he got that right. He has prescribed something to stop her urinating during the night. They have also given her a sleeping tablet at Jo's request, which the nurse and I do not agree with.
Jo got in the chair at 16:30 for tea, getting back into bed at 19:30. They have been using the rotunda to help Jo get in and out of bed as well as the toilet. When she got up at 16:30 they placed her left hand on the handle and I observed Jo actually pulling up with that arm. Once again she professed to be unaware of this, although she did complain about the pain. Getting back into bed at night she was tired and did not stand as well, nor use her left arm.
Jo was in the chair at 09:00 for breakfast. We went home at 14:00 for an hour. It was bitter-sweet, with the cats having to be coaxed into recognising her and Jo feeling like a visitor in her own home initially. It seemed to give her the left she needed though and hopefully the incentive to build on the controlled movement in her left leg we saw on Thursday. I don't think Jo realises just how important that is.
Jo had a very good physiotherapy session today, despite feeling tired and despondent. With her lying on her back and her left leg raised up at the knee the physiotherapist asked Jo to hold the leg in a central position, which she achieved after some concentration. Then the physiotherapist asked Jo to move her leg to the right. Once again Jo was able to after a bout of concentration. This was repeated three times, each time a little easier.
The last week has seen the reappearance of the nerve pain as the muscles in her leg and arm become active again. Jo is also more tired and experiencing moments of mild mental tiredness, perhaps a sign that new functionality is returning. Certainly the leg appears to be moving more and demanding attention and now, with regular transfers using the rotunda, which exercises the muscles in the leg and to some extent the arm, there are definitely an increased amount of muscle signals being sent to the brain.
Jo had a good physiotherapy session in her room today, using the rotunda to stand three times. One of those stands was to transfer her to a commode, whereupon she was able to have the bowel that has been eluding her for three days. They have agreed to use the rotunda for transfers unless Jo is tired.
The CICC meeting used set 4-6 weeks as a target date for going home. There was some discussion how mobile Jo would be at that stage and which environment would be best for Jo's continuing recovery.
Whilst watching TV Jo repositioned her left leg with her right arm and asked me to keep an eye on the left leg, in case it slipped off the footrest. It certainly seems her awareness of the leg is increasing, albeit slowly. Again, when she was on the bed in the afternoon her left arm was covered by a sheet and there was a moment of mild panic when she didn't know where it was. Once again, the brain seems to be becoming aware of the left arm and is drawing attention to it. The other thing I have noticed in the last two days is that, when Jo is attempting to reposition herself in the bed, she often lifts her right leg up and over the edge of the bed. If nothing else this is shifting her weight to her left leg, which is good.
CICC’s blind adherence to procedure above patient care means Jo is still being taken up and transferred to the bed to use a bedpan. This is at a time when using the rotunda would be far more beneficial to her progress. Indeed placing her on a bedpan is actually retrograde, fostering dependence when independence is supposed to be their ethos. This is the perennial problem with the NHS, it is designed for the benefit of the people who work there, not for the benefit of the patient.
Twice today, whilst sitting in the chair, Jo's left foot ended up pushed forward of the foot rest. I didn't see how it got there but the only way it can have done so is under its own volition, friction and the edges of the footplate would prevent it just “flopping” there. At one stage I was helping Jo put her trousers back on after a session with the bedpan and her foot lifted itself and pushed forward into the trouser leg. Once gain Jo was unaware but it certainly seems as if the muscles in the leg are working instinctively or subconsciously, call it what you will. In the physiotherapy session the physiotherapist said this is how it works, first the muscle power comes back, then the control of the muscle power. Pushing against Jo's leg while lay on the bed I can feel it resisting the pressure of my hand, stronger than last weekend too.
