Further DBS programming

Hi Guys,
As some of you may know last week I went back to Frenchay Hospital to have further programming, which I was really excited about. Since leaving the hospital I have been gradually increasing the voltage of my DBS and have seen small but reassuring signs DBS is having a positive effect.
I’ve noticed I am consistently going longer in between each spasm and both the my physio and I have also seen improvements in my movements too all of which I was eager to report back to Karen.

We arrived in good time so we took this opportunity to go and say a final farewell and Big Thanks to the amazing staff on the Barbara Russell Children’s Unit. We dropped off a cake for them along with some cards before heading over to the portable cabin for my appointment where I was met by Karen.
After a quick catch up and a wound check the programming commenced.

Similarly to last time I suffered with one of the common side effect of facial twitching and peculiar facial sensations, especially when the voltage was being turned up. Because of this it took a bit of time to find a setting that was right for me, one that left me with some benefits but no side effects.
Eventually it was agreed that a more direct channel would be targeted (meaning a specific area of my brain) and higher voltage would be set, which I would then gradually increases just like last time until my next appointment.

I think that’s the thing I find so comforting about DBS, there’s so many options!
There’s no right or wrong setting it’s all down to the individual. There also seems to be no limitation either which reassures me further that DBS is going to be the nearest thing I get to a cure.

Much love to you all and as always thanks for reading
X x x