We must speak to the physiotherapists about the pain in Jo's knee and the fact that her foot persists in leaning to the left.
I have also phoned and left a message for Jo’s consultant neurologist to contact me as I am concerned that Jo is suffering from a lack of physiotherapy, both in terms of the knee and foot but also in terms of progress, both physiological and psychological.
The physiotherapists had Jo standing from the wheelchair in the hallway and taking four steps today, holding on to the banister for support.
Over the course of the weekend Jo began to experience pain in her left leg when standing. Hopefully this is a sign of returning functionality.
Jo said that lately she has been experiencing fleeting feelings in her left leg. She struggled to describe these feelings, only that they were different and fleeting.
We attended an open session at CICC today, designed to gather feedback on the efficacy of Jo's care and others like her. We gave our feedback about the lack of continuity of care, with Jo commenting that she felt abandoned since collaborative care had ceased.
One of the other people giving feedback was a chap called Ian, who had suffered something similar to Jo, with left side hemiparesis and neglect. He seemed to be making much faster recovery, able to walk with a zimmer frame and move the left arm, with some use of the left hand. This was simultaneously inspiring and depressing. Inspiring because it demonstrates that progress is possible but depressing as he has achieved this in a little over eight weeks. Interestingly, although he had quite good ability with his left hand, he admitted he frequently forgot to use it. This was confirmed by him frequently moving this limb in conversation whilst apparently unaware he was doing so. This is a phenomenon I have often observed in Jo, albeit more in relation to the left leg than arm.
We did discover that Jo’s consultant neurologist can prescribe further physiotherapy from Collaborative Care. It is also possible that the medical insurance may cover a course of private treatment if so prescribed.
I missed Jo's second physiotherapy session with the hospital team but Jo's feedback was not inspiring. Although there are to be two sessions next week they do not seem to be generating that crucial enthusiasm that Jo needs at this stage.
The rental car I have while mine is being repaired is a four door and so has a smaller opening which proved to be a challenge for effecting transfers.
The elevation of the leg we saw on Friday seems to come and go, as with all of this. It is very frustrating and we are both very weary with it all.
Jo demonstrated her new exercises, given to her to perform herself by the new physiotherapist. One consists of straightening the leg and raising it from the floor to a position parallel with the floor from a sitting position, then holding it there for a count of five. Both Jo and I were pleasantly surprised to find she could do this.
I had to go away on business again. On my return I discovered that the extra visits from the carers hadn't materialised and Jo had soiled herself one morning. Perhaps the solution to this is also to have later starts when I am away as I have noticed that Jo will often have a bowel movement when they are washing her during a late morning visit. As her morning bowel movements usually happen at 11:00-11:30 this might be the solution.
We had a busy weekend with lots of transfers. By and large these were good but there is a certain amount of coming and going, which seems partly due to tiredness but also would appear to be the "nature of the beast".
It would appear to be the same with the hemispatial neglect; Jo frustratingly tends to keep her head turned to the right and I have to constantly keep directing her attention to objects on her left. When having a coffee on Saturday Jo could not see the two packets of sugar on the left of her saucer. When I said that was where they were she felt for them, as if searching for an object in the dark. When her fingers alighted on the packets she could suddenly see them and proceeded to pick one up, then the other without any fumbling.
On Sunday morning Jo raised both legs at the knee when she first woke up.
Social services called and agreed to put the case for extra funding for the afternoon visit.
Jo seemed to do better with the earlier bedtime visits but there is still the problem of the 5 hour gap between lunch and teatime.
I flew out to CH on business this evening. We had arranged for the care team to make the bedtime call early, at 20:00, to shorten the gap between teatime and bedtime. This seemed to work well and is to be repeated tomorrow. Social services are to call on Friday to discuss the extra funding for between meals visits.
The Community Stroke Support liaison came around. She is going to see if we can get extra money from the council for an extra visit when I am away. That way we could have five or even six visits on those days. Then there could be a morning, lunchtime, mid-afternoon, teatime and bedtime visits. If the bed time visit was earlier on those days that would suffice to cover the periods when Jo needs a toilet break. She also said the hospital physiotherapist could request further visits from the Collaborative Care team for rehabilitation exercise if she felt that was necessary. It all seems such a nonsense all this chopping and changing, especially as the physiotherapists all work on the same team! That is symptomatic of a National Health System that is overrun by muddle managers I guess.
