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Topic Rapid Decline after DBS Go to previous topic Go to next topic Go to higher level

By formydad2014 On 2014.08.10 11:25
Good morning,
My dad had DBS just over two weeks ago now. He had the leads placed two weeks ago this past Friday, and then the battery placed this past Wednesday.
He has struggled mightily since the surgery. He seemed to have been in rapid decline since approximately April, and now we are at wits end as far as to where to go from here. In April/May he was getting up and letting the dog out, getting coffee started, breakfast for himself, etc.
Now, he cannot even sit up in bed by himself or get himself up to a sitting position to use the handheld urinal during the night. He has freezing and rigidity episodes which last hours a day, whereas before the surgery they tended to come on in the late afternoon/early evening. His attitude has changed completely as well. Prior to surgery, he was more...determined I would say. Now, it seems as if he's given up and has said quite a few times over the past couple of weeks "I can't do this, I can't live like this."
We've begun turning up the voltage, but that doesn't seem to do anything. We weren't given any specific instructions as to how to proceed (apart from the mechanics of using the system) other than "turn up the generator rather than give more pills." We weren't told how much to turn it up at one time, how much to go up in one day, etc.
I've tried to tell him to give the DBS time, explain that perhaps the surgery and all the anesthesia and pain meds had a negative effect on his symptoms and he needs to wait until he's recovered from surgery to really see what the DBS will be like. But I feel like I'm blowing smoke - I'm calling a home care agency to hire a caregiver, for at least the nights now. My mom can't hear him when he calls for her, and hurts herself trying to get him to a sitting position or up out of a chair.
We know that the DBS was not a cure, won't slow progression, etc., but we had at least hoped for a few more years where his QOL (and my mom's) would be improved. Is there a light at the end of this tunnel, or is this the beginning of "the end"?

By moonswife On 2014.08.10 14:06
GET A PROGRAMMER. Please do not attempt to do this yourself. Call the manufacturer or your neurosurgeon. Dr is waiting for incisions to heal before he does the programming. Once he does, he will likely move so well he might open the incisions.

By formydad2014 On 2014.08.10 15:15
I think I may have mis-spoke. The device WAS programmed by his program manager. It only has one mode for right now, and we were told by the programmer that it is only programmed to affect his lower body at this point. She will add others in time (but we're not sure what time frame she's talking about).
So it is "programmed", but we were told to adjust the settings/voltage ourselves. The programmer told us to turn it up until he begins feeling muscle spasms in his lower legs - that's how we will know it is too much and we need to back it down a bit.
The device was turned on and the initial settings were done the day he had his outpatient surgery for battery placement.
My dad is pretty mentally set in the fact that he's not going to get better and he's stuck (pardon the pun) living like this for the rest of his life. He has a very negative outlook, and doesn't trust my mom, which makes things worse. He asked her yesterday why she took the remote and hid it from him so he couldn't be adjusted, when in fact he had told her he didn't WANT her adjusting him and to just give him more sinemet.


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