How to get the best out of DBS

Hi we appreciate you sharing with us. If you haven't already, speaking with your physician about to-do's post surgery would be an excellent conversation to have. Hopefully, others who have had the procedure will weigh in with their experiences. In the meantime, I included some information on DBS that may be helpful - https://parkinsonsdisease.net/living/deep-brain-stimulation-benefits. Also, here is an article written by a fellow community member on his experience with DBS - https://parkinsonsdisease.net/living/deep-brain-stimulation-experience. Wishing you well. -Jessica, Parkinsonsdisease.net Team Member

Hi, I’m 44, officially diagnosed early in 2018. I had dbs surgery a year ago, and it was turned on mid July of last year. Prior to this, my movement disorder specialist had me on upwards of 1300mg of levodopa daily, which became a roller coaster of on and off times. It has since been reduced to 250mg. I had a fantastic summer and fall, this, my movement disorder specialist had me on upwards of 1300mg of levodopa, which has since been reduced to 250mg. It’s made a tremendous improvement on my sleep and daily life, as the levodopa was causing insomnia as well as falling asleep without warning. I had to stop driving.


Now, a year later, my tremors are usually nonexistent, with little off time. I have some dyskinesia, but I’m allowed to drive again. It’s not a permanent fix by any means, as I still have days that it’s difficult to function, and my balance is not reliable. I’ve slowed down quite a bit, but try to stay active, in the yard and workshop. Sunshine and fresh air are definite mood boosters. I have difficulty focusing on things for any length of time (even writing this was painful), and other non motor symptoms, which seem to come and go at random. For the year prior to surgery, it seemed I would be getting up to go to the bathroom several times a night. Now I can sleep right through the night- usually. I don’t know if it’s the decrease in medication or the dbs…


I’m sure there’s more to add, but I can’t think of it right now.

I’m 75 years old and was diagnosed 8 years ago. I was experiencing several off times per day. Taking large doses of carbadopa/levodopa 4 times per day. I experienced dyskinesia several times per day. Occasionally, for more than an hour. Other than Parkinson’s, I’m in very good health. I had DBS surgery on my right side brain 14 months ago. It gave me back my life. I exercise rigorously 5 to 6 times per week, sometimes 7. I exercise as hard as I can for maximum benefits. Sometimes I have to go home and take an hour or more nap. I’m have cut my medication by 40%. I’m sleeping better. The surgery wasn’t bad. I watched on a big screen tv. (I saw my own brain! How many people can say that!?!) Asked and answered questions in a conversation throughout with my wonderful brain surgeon. There were a couple of uncomfortable moments during the surgery. Putting on the halo, the shots of lidocaine before the incision on my scalp, and the noise when he drilled the hole in my skull were less than 5 five minutes of pain/ discomfort to get where I am. My disease is progressing, so I expect to have the surgery on the left side of my brain in about a year or so. I would highly recommend DBS to anyone whose movement specialist neurologist tells him or her that he or she is a good candidate. Did I mention that I got my life back? lol