I’ve been diagnosed six years now (I’m 76). Three years in, my neurologist suggested DBS so I spoke to a neurosurgeon who has done many of these procedures. He said DBS works on “motor symptoms only.” Since medicine works for me, I did not go ahead. Recently I spoke to a friend in biotech who had just spoken to the Chief Scientific Officer at a biotech company about DBS. The CSO claimed it works on sleep fragmentation and some other non-motor symptoms.
Anyone have any experience with that?
I have read and/or seen on the Web some work being done with other issues, such as depression, using DBS electrodes planted elsewhere in the brain.
Bob
My understanding is that DBS doesn't help with sleep. You might want to try the Zeez Sleep Pebble. I am connected - our case series with people with Parkinson's has just been published. Happy to send more info, or search...
Seven years after my Dx. and a myriad of drug cocktails and combinations, my 4th resident Neuro at Mayo Rochester suggested DBS. I qualified cognitively (because they just didn't do this procedure for anyone at the time) by sorting blocks, drawing patterns etc.
I was then sent to a psychologist. He became much more interested after learning I had quite drinking many years prior to dx.
He shared with me at that time the vision they had for DBS and how properly used and placed they felt it could alleviate if not cure many behavior issues. The list included many things that made me feel like I was entering a George Orwell novel! He wanted to sign me up for a study with them.
Saying no, I have been happy with the DBS over the course of the last 7 years and one battery replacement. I would do it all again!
Did you have dyskinesia prior to surgery? Thank you 😊
yes, unmanageable.... drugs were a "crapshoot". It had gotten to the point that either worked or they didn't. I have been lucky with the DBS, but it does have it's draw backs. Don't get me wrong. it has greatly extended my useful life!
Pelley, What are some of the drawbacks? I am thinking of looking into this for my Mom. Dx in 2008. She is 85 and miserable with dystonia symptoms. And now shaking is also in her jaw - her mouth shakes, in addition to her hands and legs.
I'm sure there have been many prescription changes and medication adjustments since her diagnosis. If she has a good quality of life still and maintains good cognitive function I would ask her Neurologist to pursue it. No disrespect intended, but one has to look at age and mobility as well. I wish her, and you the best.
pelley
What have the drawbacks been if you don’t mind my asking. Battery? Thank you
The realization of progression..... Before it was seemingly gradual. Now when something new "pops up" I recognize it as progression with sort of a mental time stamp. Although it is something that most likely has to be addressed with adjustments done by the DBS programmer. So•••• I wait until it works on my good nerve or wait until my next Neurology appointment . Things are always changing as I'm sure you're aware.
Non-motor symptom medication
DBS - does it wind back the movement clock??
WOULD LIKE TO HAVE INFORMATION FROM THOSE WHO HAVE HAD DBS
Caloric vestibular stimulation for the management of motor and non-motor symptoms in Parkinson's disease
