Peg,


I am highly dubious of DBS due exactly to side effects you list. I don't yet have any balance problems but do have freezing of gait, and I hear it does not always help that. Plus I know someone personally who has had surgery twice; the first time he noticed improvement early on but got an infection, so out it came. Second surgery and it seems botched after a year they are still fine tuning and he is still on a bunch of levodopa. Whenever we chat online he seems more off than I get at this point. I'd rather dose meds closely and deal with a little discomfort than to risk all that is at stake.

Have you considered entering the Phase III open label Duodopa trial? Numerous sites all over the US are involved. I am already fed up with the meds and want my life back. It is precisely for advanced patients and those who do not qualify for DBS. The only down side to it is the darn med cartridge has to be lugged on your person, but if you sew or knit can turn it into a fashion statement. ha. I figure it is less invasive and can keep an eye out for GDNF in near future if need be.

As an aside, my doctor mentioned to me that one reason they are promoting DBS earlier on is because they were finding that it kinda suspend ed you at that point in the disease. In other words it may (temporarily) slow or stop or somehow alter degeneration so it sounds promising in that regard.

Laura