My biggest disappointment is that efforts by a physio to get S walking again (or I should say to keep walking as I was getting her to walk a few paces for some weeks after the 'fit'), which has been my number one priority, turned out to
be spasmodic and half-hearted. On three occasions I saw him and his assistant helping her to walk and once she walked round in a tight circle in our living room (a difficult manoeuvre) holding onto her walker/travel chair whilst they had their hands at the back for safety. But then we didn't see him for nearly a week and we were back to square one. It seems blindingly obvious to me that the only way to help her would be very regular visits - maybe every other day - and the resources just aren't there to do that. A handful of further visits followed though he ducked out after another week long absence and was replaced by a couple of less-qualified people. Then we were told that, as they were a short-term service, they could not continue. No NHS physio who saw her was a neurological physio (trained in helping people with neurological conditions) which could account for the main man's official report that he had stopped because S 'could not follow instructions'. There could of course be two reasons for that - Alzheimer's Disease and Parkinson's Disease.
Eventually I started investigating private neurological physiotherapy but it is difficult to find suitably qualified people who do home visits. However, we finally found one who came last week for a very expensive initial assessment. Although, understandably, she made no promises, she was impressed with S's strength and the fact that there has been very little muscle wastage in her little- used legs. It was reasonably successful I felt as did our wonderful new main carer K. The physio was pleasant and seemed to get a good grasp of the situation. The biggest problem seems to be that when S is up on her feet, with help, she is always leaning backwards. We have to work on this. One exercise is to have her sitting on the edge of a chair and encouraging her to keep leaning forward (which she can do) to hold onto something. We will also continue with the various passive exercises we have been doing, mainly with her legs. Her hips are very stiff and the physio said that we should get her out onto a chair for several hours a day and that the hospital bed isn't doing her any favours.
When we move back downstairs (which will be soon now), it will be easier to move about. She can have breakfast in the kitchen/diner, sitting up at the table as she did pre the 'event'. Then she can sit on a comfortable chair or sofa in the living room.
The physio is coming back in a week's time. Both K and I and I feel S is continuing to make progress and is taking the initiative and weight bearing to a greater extent when we move her from the bed to the commode etc..