Last week I went back to see the nurse specialist, Lincy, and the Medtronic rep, Chris, following up on the problems I’d been having with the new programmes. Chris checked through and confirmed that he had in fact changed programmes D and E (my previous two usual programmes), and not created new versions as he’d intended. Nonetheless he was surprised I found them so much more uncomfortable. What really confused him though was the fact that I’d found programme F the most comfortable, albeit with some overstimulation on the left. Evidently F and G were the ones he’d created to try to target my foot and were not intended to improve on my back coverage. Since F seemed to be working he proposed he target that for my back, and also make it a posture-aware AdaptiveStim programme.
As such he adjusted the settings so that I didn’t trigger significant overstimulation when moving around upright. Having set the tolerances for that, we then did the same when I was laying down. The way the programme works is it can detect my general posture and then use the appropriate tolerances associated with that position. He also showed me how I can adjust and set the levels if I start to get discomfort. I’ve had that setting for 10 days now, and I’ve not had any issues. Well, I say no issues – I have had some bad days, but I can definitely put that down to what I’ve been doing. Baking a cake is manageable, but less manageable was baking 2 cakes one day, and 3 cakes the next on Christmas eve! Add on the fact that I then did most of the cooking for Christmas dinner, and baked a further 2 cakes on Boxing Day morning. I think I can chalk the subsequent pain up as pure stupidity and nothing to do with the device not working well.
Physio
Between neuro appointments I had another visit from the physio, Jess. We talked about my progress, and what else I might be able to achieve. Jess suggested I try using my sticks a bit more just for short distances when I’ve got someone like Ruth with me. She asked if I’d tried a 4 wheel walker. I explained that I tried one in hospital and couldn’t cope with the unpredictability of where it was going. My brain simply didn’t connect with my legs properly to work out how to move to keep it in a straight line. Jess made the very fair point that I would’ve been on some pretty serious pain relief that soon after surgery, and that wouldn’t have been helping. She thinks it is worth giving it a try and will bring one when she comes back in January.
Taking a tumble
We’ve been away for a few days since Christmas. Where we’ve been and what we’ve been doing (kids parties, family gatherings) and the fact Ruth needed space in the car to bring her decoration equipment for our Grandson’s party, I only brought my fold-up chair with us. Without the car hoist, getting it in and out has been very much weighed up against how beneficial it would be for the relatively short distances I would use it for. Also, following on from Jess’s advice to try using my sticks a bit more when Ruth is with me, I thought I’d try doing that. Overall I’d say that’s been ok, although my legs are definitely feeling the muscles being worked more than they have for quite a while.
This evening when we got back to the hotel I tried to put the car on charge, only to find the chargers at the hotel not working. The next nearest was at the supermarket a few hundred meters away. I knew it would be too far for me to walk back to the hotel and then back to the car to get it once charged, so I got my chair out of the boot. Now there’s a palaver for a start. I don’t think I’ve used this chair since we went to Edinburgh in February, and I couldn’t remember how the two parts fitted together, and the car park was dark. I did eventually manage it, and I trundled back to the hotel. A little later when the car was charged I went back to collect it. As I got out of my chair I turned around and, well I don’t quite know what happened, but I suspect I tripped over the rubber strip on the ground that stops you reversing too far back. Next thing I knew I was down on the ground. Thankfully my sticks had landed right next to me, and with a bit of shuffling around, rather a lot of groans and swearing, I managed to get myself back to my feet. I unplugged the car and managed to get the chair apart and back in the boot, and got back to the hotel.
I seem to have come away without anything in the way of cuts and grazes, just a couple of sore areas of my hands, and it has jarred my back. I had a soak in the bath to try to ease it, and I think that helped, although trying to get myself out of the bath, even with Ruth’s help, probably undid any good the bath had done. I suspect I will be feeling rather sore in the morning.