I have recently made the move from a non rechargeable dbs battery, to the Percept, rechargeable battery. I’ve had dbs for 14 years so my Parkinson’s is pretty advanced. Saying that however I manage pretty well with 3 specific settings on my DBS patient programmer optimised for speech, mobility and sleep that I switch between multiple times a day. A couple of button pushes and I 5-7 seconds I’d be golden. Sure it was a pain being so reliant on my old controller but it did the job. Simple. Easy to use. No fuss.
Here’s a picture of us in happier times
I had a meeting with my consultant who now only wants to see me once a year and he says well put you on a rechargeable battery on your next change shall we? I said no - I’m a very disorganised person and my lifestyle is not conducive to being able to charge myself (and all the other peripherals that come with it…more of these in a moment. Ha looked at me and said…. “Well rechargeable one’s last much longer than the one you have in now and whenever you have the surgery there’s a small chance of infection..if this happens we’ll have to take the DBS out and you could be without it for 3 months”
Feeling a little bit scared of this, I foolishly agreed.
7 months later I’ve had the new battery put in and the amount of upheaval and change to my life this is going to bring is making me wish I had been braver and said no. Why?
1: the patient programmer. Chuck your old little controller out we’re giving you a SMARTPHONE (because touch screen is so great for people with PD)….there’s an app pre installed on it which you can use to access your DBS settings. But before you use that you have to pair the bloody thing with ANOTHER FLIPPING DEVICE, the communicator, which acts as a go between the app and your battery. Still with me?
So once you have turned your phone on, communicator on, opened the app and provided the Bluetooth connection is working, about 90 seconds has passed. Previously to change my settings this was possible in 5 seconds. As you know, timing is critical in Parkinson’s and how Medtronic has screwed up a perfect way to work your DBS is staggering to comprehend .
2: you have to charge everything. The phone, communicator the battery that charges you and the battery that charges the battery inside you!,
3: I came home with so much crap from Medtronic I was starting to feel like a poster boy for them…free advertising. I feel more disabled now than I ever have with the amount of tech I have to carry around with me every time I go anywhere.
4: I asked will I have an extra session with my consultant to explore the brain sense tech to allow for more targeted and precise programming that percept offers? “Er probably not…when’s your next appointment ?” “Next year “ “oh that’s a bit of a wait isn’t it”
Did they just want me on a rechargeable battery because they didn’t want me bothering them every 5 years for a replacement?!?
This is an honest account of my experience of the change from non rechargeable dbs to rechargeable DBS. Your experience may differ greatly but if you like me, find yourself reliant on personalised modes or settings to get through your day I’d very much think carefully before you are strong armed into the switch.
