My husband has an appointment to have his DBS programmed today. All kinds of feelings....anticipation, hopefulness, concern, and just plain scared! After 18 years of dealing with this disease, we're praying this will offer an improvement in his QOL, although it could have been a lot worse judging from some of the postings on this site. Keep us in your thoughts.

Good luck!

Sending positive thoughts and the DBS science is improving constantly....

Eric

How’s it going?

Best wishes - Please remember to be patient - It WILL take 6 - 12
months for the adjustments to stabilize.

His tremors have decreased by about 50%, but he has picked up some mouth and head dyskinesia that he didn't have before. But, since he is still on his regular meds, the programmer says this is not unusual. He has his next appointment in 3 weeks and they will decide if and when his meds can be decreased and by how much. We realize this is a trial and error process and not to expect an overnight result, but it's hard not to get anxious.

I wish you and him the very best!

Head and mouth dyskinesias?!? Exactly what I want to avoid by getting DBS. I have had them a few times at day’s end when I hadn’t eaten enough. Distressing and I had blisters in my mouth the next day— so painful. Please give him a hug and advocate strongly for him. Three weeks is too long if he gets blisters IMHO. Keep us posted please. Thank you.

Hi Jo Ann, The lesioning effect which I'd say has been explained to you both will settle in a while and it will then probably be easier to get a more accurate program setting.
Since he's not seeing any of the DBS team for 3 weeks if it were me (and I've done this) I'd reduce the meds a little.
For example if he's taking say 100mg levodopa 3 hourly try reducing it just a little to 75 or 50mg around the time a dose usually has been causing this new dyskinesia and go from there.
I hope he gets a patient programmer which he can adjust up and down himself (within a certain range) later on.
Best wishes

Programmer upped the strength by .2 on each side. Tremors are even less than before, and she has told us he can start to decrease his c/l pills by 1/4 each time to see if this will help with the mouth dyskinesia. He's starting this reduction today.....we'll see!