Thank you, Lindy, Linda, and Carey (and whoever else) pointed out the problem that out of 50 “experts” on the panel, not one was a patient (at least not mentioned). I am not as forgiving and hopeful as most of you sound. Why is it that every time I turn around, one of my friends/acquaintances with a DBS has an infection, a broken lead, needs “exploratory” surgery—exploratory brain surgery—or is in a never-ending, unsatisfactory battle with the stimulator, the programming or the programmer? Or struggling to pay their part of costs of surgery and follow-up doctor’s appointments?

“Nowhere have I seen 'surgical removal of the area[s] of the brain CAUSING PD' described in that way before. In addition 'motor fluctuations' is used alongside 'tremor'. The first is a side effect [of medication] and the second a primary symptom of PD.”
--Lindy

Why spend the money convening all those experts if they can’t keep these rather important distinctions and definitions straight? Or report on them clearly? (I haven’t read the full article, so my issues might be more with the author of this clipping. The lead author of the whole article, Jeff Bronstein, is someone from whom I would expect careful and sensitive work.)

I find the phrase “the area of the brain causing PD” especially horrifying—especially in the context of removing it. We don’t, they don’t, know what part of the brain that might be or whether PD is “caused by” a certain area or areas at all. Current thinking points to PD being more systemic than simply located in the motor segments and pathways of the brain. (Reference Braak’s staging hypothesis) The disease may be most obvious clinically once it has reached the motor center of the brain, but that may be all it is—the most obvious clinical evidence (and I use the term loosely). I notice, however, that this panel met in April 2009 and it is reported in the current issue of Archives of Neurology a year and a half later. Sometimes a lot can happen in 18 months. Whole theories on what PD is can be revolutionized.

I applaud all those who have undergone DBS—especially those of you such as Gretchen, Michael, and Jackie who have used their experiences to benefit others seeking reliable, valid information and perceptions from an expert’s point of view, a patient’s point of view; and those of you who felt you had no alternative given your own situation. But, I have never liked the near cavalier attitude I have seen in some Medtronic reps, neurologists, and patients who have undergone DBS toward those (of us) who decide not to undergo this treatment now or, perhaps, never. Sometimes it feels like they are new converts with a need to convert those around them—whether they like it or not.

I have known many people who swear by their DBSs, rather than at them, at least after the criss-crossed or broken leads are fixed and the infections cleared up, but just as with medications we are still talking about imperfectly covering some symptoms, some side effects, while sometimes creating others. It just doesn’t seem like enough to me.