From previous blogs, you will have read about my efforts to stand using a standing frame at the National Hospital for Neurology and Neurosurgery (NHNN), in Queens Square, London, and the really brave ones amongst you will have watched my video's of these efforts. You may also have read about me looking into getting a stand up powered wheelchair.
Yesterday, I had another appointment at NHNN to see the physiotherapy team, with a view to continuing these efforts to stand. I was hoping to make some adaptations to how I had stood previously in order to see if doing this would make a difference to how I could use a standing frame, if I had one at home.
The day started at 6.00 am, when Augusta, my new carer - I'll tell you about that later in the week - came and got me up. Having showered and dressed, had breakfast and had my pills, I was ready to be picked by the hospital transport by 7.00 am. They duly arrived about 7.15 am.
Once I was strapped in the driver advised me that we needed to pick up two other patients on the way, but as my appointment wasn't until 10.00 am, we had plenty of time to get there.
The first patient we had to collect, was in New Addington, which isn't that far away from where I live, but getting there usually means going through Croydon, and then back out. However, this morning the driver decided we would take a more scenic route, and go round Croydon, using some country lanes.
This made a very nice change as I don't often get to go out this way. The first part of the route was similar to one I used to take, when I was driving, to go to a supermarket, that was a bit quieter than the ones really local to me.
However, we were going down one of the lanes, just past a golf club where I used to occasionally play, when we came to a sign stating that the road ahead was closed. We had to reverse back to the entrance of the golf club and then turn round, and take another route.
We got to the first patients house and got him on board, and set off to collect the other patient, who lives in Southwark, which is just south of the River Thames.
On the way the driver used a combination of his sat-nav and local knowledge, to try to avoid traffic. However, at one point the traffic came to a stand still due to an accident up ahead, and we had to turn round and find another route, and then at another point, we went down a road, and came across another "road closed" sign.
When we were almost at the home of the patient, the driver pointed out that he could see their house, along an alleyway, but that the turning up ahead to get him there was blocked off by workmen. So he then had to go round in a huge circle to get to another entrance, to where her house is.
We eventually picked her up at about 9.00 am. She was very agitated, as she thought that the transport would not get her to the hospital on time - for 10.00 am - and it was her first appointment there and she didn't want to be late. I was able to reassure her that we wouldn't take too long to get there and that in any event they would see you if you arrived later, if you were using the hospital transport. This seemed to calm her down, and we actually got to the hospital about 9.25 am, which gave her plenty of time to get to her appointment.
On the way into the hospital, I meet Liz Dewar. She was out of her regular physiotherapist uniform, and I almost didn't recognised her. She said that she was in meetings most of the morning, so was unlikely to be able to come along to my session this morning.
I went off to find a toilet - after two and a quarter hours in the ambulance, I was bursting - before going and booking in at the physiotherapy department.
Rebecca, who I had previously seen, has left NHHN, as part of the regular rotation of staff that happens with Occupational Therapists and Physiotherapists. This meant that I was seeing Mark, who had just started at NHNN, as part of this rotation.
We started off with a quick chat about what I had been doing on previous visits to NHNN, and what progress I had made. I told him about the demonstration of the stand up wheelchair, and about my reservations regarding these. I suggested that if we could try the standing frame, if we could adapt how we had used this previously, in order to see if it would be possible for me to use one at home.
Mark, went and made sure that the standing frame was free for us to use, and also made sure that there was someone else to help us use it.
The things I wanted to try out where to see if I could rise from my wheelchair to a standing position, and to see if by raising the table at the front of the standing frame, if this would help me to stand upright more independently.
Standing Frame - similar to the one used at NHNN
We first tried standing, using the standing frame, from sitting in my wheelchair. I always thought that this would be a long shot, as previously I had been standing from the side of the physiotherapy plinth, which could be raised up so that the start position for any stand was much higher, and my knees were less bent, and my bottom was very much above my knees. However in the wheelchair, my knees are bent less than 90 degrees, and my bottom was below my knees.
After a couple of tries, it was apparent to us all that I would not be able to stand from the wheelchair.
I then transferred onto the physiotherapy plinth, and the standing frame was set up in front of me. Once I was fully strapped in, and the table at the front had been raised, we started to stand. The first time, I got half up, but one of the knee blocks was in the wrong position and was pushing into my knee cap. So I was lowered down and the knee block was adjusted.
On the second attempt, I got myself fully upright, but even with the table raised, was unable to stop myself from slumping forward. However, the whole stand was very much, more hard work than it had ever been in the past, and even having got myself up and with my legs straight, it was still very difficult to maintain that position. In all I probably only stood for about 2 minutes.
I was completely exhausted by the effort, so much so that I had to accept some help in transferring back into my wheelchair, something that I would usually stubbornly refuse to do.
Mark and I then spent a small amount of time reviewing the exercises I do, and he suggested another I could add. We then briefly discussed what other options there might be to help me stand, and we decided that next time I go, we will try an electrical tilt bed.
Electrical Tilt Bed
Things were so bad that the video's that I normally produce to accompany these blogs, and to show you my standing, have been scrapped on this occasion. I am so disappointed with the results that I don't want to share it, and have already deleted it from my camera. Also the swearing would mean that it would have to be classified as an X-rated video nasty.
I usually have a full 2 hours with the physiotherapists, but only used up a little over 1 hour 20 minutes.
I checked in with the transport for coming home, and then waited for a driver to collect me. I was called, loaded up and on my way just after 12.00 pm, and after a straight forward run home, was back indoors just on 1.30 pm.
It was a useful day, and answered some of my questions. Certainly it is obvious to me now that a standing frame is not a reasonable option to have at home, as I need too much assistance to help me use this.
I was though, really disappointed with how things had gone with the stand from the plinth. It has been 10 weeks since my last appointment, but even so I would not have expected this to have made standing so difficult. After all, when I first went and stood at NHNN, it had been 4 years since I had stood, and it hadn't seemed so difficult,
I was exhausted so quickly. These appointments are usually very tiring but it is worth it for the benefit, I feel I get from standing. However, this stand hardly seemed worth the effort, and I seemed to spend more time struggling to maintain the upright position, than enjoying it, as I had done before.
It may be I was having an off day, or that the accumulation of all the hot weather we have had here recently has sapped my strength, or it may be that something in the way the machine was set up was slightly off from what I had previously experienced and this made it all harder work.
Whatever the reason, I am glad to have got some answers regarding the possibility of having a standing frame at home. But I'm annoyed, disappointed and frustrated with myself that I couldn't even seem to achieve what I had done before, when standing.
It is though, only a set back, and certainly isn't going to put me off trying to continue to stand. I just need to find another solution, and that may still be the stand up powered wheelchair.
This morning, my shoulders, neck and arms are very stiff and sore, and this is perhaps a sign that something wasn't right as I had never had this before, after one of these sessions.
And just to add to my bad day, when I got home I found that I had lost my cap. I knew I'd had it when I went into the hospital, and had taken it off when I went to the toilet, after getting there. However, I don't recall seeing it after that.
Just another thing to add to a disappointing day out.
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