On Again

I went and had my device switched on(?) again on Thursday. I have a slight side effect on my left side that will slowly fade away. It is not as bad as last time but it is still a pain. They could not tell me if I was on or off in the past 6 months.

They have discovered that people with Cerebral Palsy cannot tolerate vast changes in their device as their GPI goes into shock. So now I have to incrementally put up the setting slowly by 0.1 or 0.2 every week or fortnight. I don’t think I am going to like that very much if I get side effects from it and feel as tired as I do.

Yesterday I tried standing up behind the lounge. It was really hard to do as my body would not respond – I couldn’t get my right (good) leg to move even. It was really scary and frustrating. I was doing better before DBS. I think it has to do with the brain repairing itself after having the device turned on or incremented. In the long run it will be better. I did notice a reduction in twitching though so I guess that’s good.

Anyway, I’ll just have to be patient I think and see what happens next.

- Martha