Interesting sounding conference. Some of the DBS guru's are invited as speakers.

I want to know more (MUCH more) about DBS. Why? Because I have had five doctors (all neurosurgeons or MDS) to tell me that it is my only option. I just don't believe that!

I have advanced PD (dx in 1994, but had symptoms at least 5-6 years before that). Now I suffer from pretty bad dyskinesias, and horrible, horrible dystonia. I have such pain that I can actually see the muscle spasms in my neck writhing and twisting. I haved tried muscle relaxers, pain killers, pain patches, and injections and/or epidurals injected at the sites of the pain. They work for a few days, but that's about it.

But am I homebound and nevevr get out? No! I still drive (but need to do so sparingly) and attend all types of functions. But I must rely on someone to travel with me or can never make a full commitment knowing it might "be a bad day."

What bugs me is all of those suggesting DBS don't seem to be evaluating my situation. There is nothing I have read in the literature that says DBS will help with pain. I am not tremor-dominant - never have been a "shaker." I had experimental surgery 11 years ago of retinal cell (dopamine-producing cells) transplants. The trial was halted about 2 years ago because it did not meet its endpoints (i.e., did not show efficacy over the placebo group). I was in phase I and knew I was getting the cells. It definitely slowed my progression.

These are facts that the pharmaceutial companies will tell you and that I have observed first-hand:
1) If you have balance issuses, DBS can make it worse.
2) It can greatly affect your voice (I have a good strong voice now - when I am in a bad off, my volume is reduced and I sometimes slur words, but basically have a good voice.)
3) I have known 10-12 people personally who had infections and had to have some of the hardware replaced or removed.

I could say much more, but will stop for comments. I just do not believe the benefits outweigh the risks in my case. Anybody want to try to convince me otherwise?

And I might add that this conference is being hosted by NIMHS
(National Institute of Mental Health)
and this is how it is advertised:

Deep Brain Stimulation is a treatment which has been initiated in over a dozen neurological and neuropsychiatric conditions and disorders, yet the mechanism(s) underlying its efficacy are largely unknown and subject to much speculation. The procedure has also been reported to produce numerous instances of adverse effects, ranging from bleeding within the brain and infection to cognitive dysfunction, hallucinations, compulsivity and even depression. This symposium will address the current range of applications, efficacies, case studies, and the theory and modeling that attempt to uncover the biological underpinnings of its beneficial effects. The ultimate goal is to bring about a greater understanding of the means by which the beneficial effects are produced, at the molecular, cellular & network levels.