best of luck, i'm also 2-3 months off, haven't been given a date yet and they need a date to submit to insurance. i talked to one DBS person in my dance for pd class after class, we were at a cafeteria and she ordered a large lunch with turkey, something which would wreck havoc with my C/L for hours. I commented on that and she told me after the DBS she just started eating more so not sure if weight gain is just less calories burned thru tremor, etc.

Soccertese, I wish you the best of luck. I had DBS a few months ago under the Boston Scientific study here in Northern California. I'm very glad I had DBS. The worst debilitating symptoms (huge tremor, severe & painful dystonia preventing walking, slowness, etc.) are gone. In many ways, I now look and act "normal" and walk, bathe & dress fast, stand upright, exercise, use computer, etc. It really feels like a miracle and I often just feel like a normal older person & can forget I have PD. However, I must add it was not easy. I had many very bad moments. The whole surgery process itself is not easy & has many risks (low, but not really known precisely since complete data are not available). Also, DBS is often, maybe always, a tradeoff. You lose some symptoms & gain others. There's no free lunch. Just one example: I now have new swallowing & speech problems that can be pretty bad & very scary. As programming has fine-tuned my device, I've gone through many different new symptoms, some of which (like balance & falling, extreme hyperactivity, etc.) have been strange, scary, & dangerous, but were ultimately resolved. For DBS, the most important things are to find a good surgeon (not easy to determine, see data comment above), get properly screened (not everyone benefits from DBS), inform yourself on DBS, have realistic expectations, be patient, and be persistent & practice good communication skills to insure optimal programming (don't let them shine you on & don't take no for an answer).

Just to clarify about the BS study (re: another post above), it actually isn't true that you aren't turned on (activated) for 6 months to a year in the BS study, at least not here, where it's somewhere between 2 weeks and 14 weeks. Not that different from non-study DBS, since current thinking is it's best to wait until all surgery effects are healed anyway. Here's how it works: My surgery was done in 2 phases in December 2015 & in January 2016, one surgery for each side. Two weeks after the 2nd surgery (Week 1 study visit), 75% of the participants are turned on. The other 25% are not turned on until the Week 12 study visit (14 weeks after 2nd surgery). All participants are "blinded" so you don't know which ones are activated until much later in the study. The possible advantages to the BS Vercise device are that there are more contact points on the leads, which means there may be more and better options for programming. That's what the study is all about. Device is already available in Europe.

BTW, things I should have added to my above post: I tested as an excellent candidate for DBS, tremor dominant, meds ineffective, excellent cognition, right age (not too old), etc. In my case, Sinemet had never worked well to control my tremor, and it gave me terrible dystonia (a type of dyskinesia) right away, within a year or so. In fact, though many people believe that C/L works for everyone, my MDS doctor told me that for 60%-80% of those who are tremor dominant, like me, C/L doesn't work. Also, re: the weight gain or loss question, it is known that DBS can cause weight gain, and in my case it definitely has increased appetite and, alas, weight! Another DBS tradeoff...

Soccertese..Good to hear that you are in the process of having DBS surgery..I can't say enough about how it has changed my life for the better..I was not one of those patients who was able to cut down my meds..I still take the same amount, but I no longer have to deal with the horrible side effects that I had prior to surgery..My batteries are still off..It has been 8 months now, and my dyskinesia is little to none..I get about 4 more hours of on time every day..I still have some problems with balance and freezing when I am off..I came to the same conclusion that you did..I am going to be 63 July 3rd, and I got sick and tired of being sick and tired..I had no idea how sick I was..I wish you the best, and hope it does everything for you that you hope for..All I have is Medicare, and the bill was around $2000.00 that I have to pay out of pocket..A small price to pay for the results of the surgery

thanks for your perspective peony and especially bringing up the fact you can have major ups and downs after the surgery, i guess i've avoided dwelling on those experiences. i'm pretty much putting faith in my doctors judgement that i would be better off with DBS than i am now, and i seem to fit all the criteria, great response to L-DOPA, etc., etc. figure strike while the iron is hot and i qualify, might never happen again. could turn out to be a major mistake if republicans win and i end up having to pay sky high premiums because i have pd - not on medicare until 2019.

Just like PD patients, responses to DBS are all different, so you won't necessarily have the same experiences that I did. Your ideal outcomes may be easy & fast with no bumps in the road. But I think it's best to be prepared & know all possibilities, as it helps you keep patient & stay the course if you do encounter any bumps.

Sharp eyes may notice that you mentioned your great response to L-DOPA (C/L, Sinemet) as one of the criteria for being a good DBS candidate, while I mentioned I was an excellent candidate despite not responding well to C/L. Just to clarify for those who wondered about this: Both are correct. Usually good response to L-DOPA is required for DBS, EXCEPT for tremor dominant patients (like me) who tend to respond well to DBS regardless of C/L response (as confirmed by NPF & all other sources I read as well as by my neurologists). I thought that might be useful info for any others who might be considering DBS.

Again, best of luck. Just like you, I tallied up all the reasons to do it and, as I said, I'm certainly glad I did do it, even with the bumps.

Soccertese - Are you still dealing with the foot rigidity symptom? Is that anticipated to be transitional or permanent? The same thing started with me 2weeks ago.

Have you an idea of an average added/projected lifespan for those with DBS?

WOW, those are tough questions. yes, i still have slight rigidity in my feet when on and worse when off which i expect to be forever, but who knows if the DBS will eliminate it?
i have no idea what the answer is to your 2nd question, increased lifespan was never mentioned when my neuro suggested it, i was told it might increase how long i can live independently which i was one reason i decided to do it. i think if you lived longer with a DBS on average that would be a well known fact. i want to live better, the longer is secondary to me.

The neurosurgeon told me it had recently been determined that DBS has a beneficial impact on problems with swallowing, thereby potentially increasing lifespan. Like you, my main interest is centered on enhancing qualify of life.

Bluesking, that's strange, because my neuro told me that DBS often causes swallowing problems, it's one of the side effects that can occur. In my case, that's exactly what happened. Although I'm happy with my DBS results overall (little to no tremor, etc.), I have serious speech & language problems that I never had before DBS, including difficult breathing, being winded, a softer, slower voice, & swallowing/choking problems many times a day. I'm still hoping it may be programmed better, but many things about DBS involve a trade-off, so I may have to settle for some level of motor symptoms like tremor (just as one possible example) if I want some other bad things programmed out.