Anniversary of the first fit

A year ago yesterday S had her first fit. I've just looked back at what I wrote during the first few days after the fit and I sound pretty hopeful that S would walk again. Several thoughts occur to me about this now. One is that if we had not been so let down by physios she could have managed to walk again - after a fashion and never without support. But I also see now that her walking was becoming more and more erratic in the weeks leading up to the fit and it's very likely that, even without the fit, we would probably have been in a a very similar situation regarding walking as we are now. In fact, S can take a few paces with support and we get her doing this at least once a week She is always keen to do it and I'm sure it does her good in a number of ways. It also makes me think that, in the event of a fire, we could stagger to and out of the front door which is only a couple of metres from the bedroom door.

I also realise that had we not had the crisis a year ago we may have struggled on with the fairly modest level of help we had (6 hours a week) for much longer and that situation could easily have led to more potentially serious falls. It's also unlikely that we would ever have met the wonderful carer K and our other very good carer who have made such a difference to both our lives. And, of course, it's quite possible that, although we would have had to get more help eventually we would not now have nearly as much as we do.

Finally, it's important for me to keep reminding myself that S is not essentially different from how she was just before the fit a year ago and she is actually better cared for now than she was then.

Still trying to get S walking

We have had a second visit from the private neuro physio. She noticed some improvements in S's movement and balance. The main problem is still that the bent knees aspect of the 'Parkinson's gait' stops S from standing up properly and this is not helped by her understandable lack of confidence after so long off her feet. This is something that might be helped by increasing the dosage of the Sinemet (Parkinson's med), When S first took it about a year ago, the improvement in the gait was noticeable. I have spent a lot of time chasing the Parkinson's clinic for a home visit to assess and prescribe. They do do home visits, it turns out, but it might be a long wait.

In the meantime, the physio was all in favour of us getting S out and about once we are downstairs and have a wheelchair, and she is confident that S has the strength to allow her to be moved from the wheelchair to a car seat. She mentioned a transfer board. If this proves possible it will open up new horizons for us even without S being able to walk. She had some helpful suggestions about ways to make transfers more efficient and safer. When she had gone, K and I transferred S from chair to bed using the suggested technique and S actually took a couple of steps during the process. She was fully supported by us but still this is more than we've seen for quite a while.

We've agreed that she won't come again at least until we have the wheelchair, in 3-4 weeks. I do feel that she is reluctant to try too much for fear of injuring S and is also very reluctant to do things that cause S to be agitated. But the agitation she is seeing is very minor from our perspective. She repeated something that she has said before which is that we may find that with increasingly regular activity S may just start to to walk. I'm sceptical as S was needing a lot of support to get started even before the 'event'. But I do feel that if we are a little more active in supporting her she may eventually overcome her fear of being on her feet, which is currently a major factor.

So there is still some hope.

Trying to get S walking again

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..