Parkinson's Disease and Deep Brain Stimulation

[cheddarpie]

Anyone here have experience with DBS for Parkinson's? My dad is likely having the surgery next spring. I'm doing my own research, but I'm curious if there are any anecdotes from personal/parental experience among this group. Risks, complications, outcomes, successes, special tips for recovery, etc.

Thanks!

[NoStacheOhio]

I don't personally, but I work at a place where we do a lot of the surgeries. It's worth traveling to a place with experience.

Make sure you go with surgeon who has a ton of experience, and who's willing to explain exactly what's going to happen.

The surgery is a little weird, because he has to be awake and interacting while they're placing the leads. The results I've seen have been incredible though. To the point that I know doctors who have started crying in the OR with their patients.

[cheddarpie]

Thank you! We would be at Emory -- about 4 hours from where my parents live, but Dad's regular PD doc is there too so they go every few months.

Wonderful to hear your see such good results. We are in the phase of being cautiously very hopeful and trying to balance that with the tradeoffs.

[Lulee]

I hope all goes well with your dad, cheddarpie.  Please update us as things progress and you learn more and especially how he makes out.  My great uncle had Parkinson's as does my brother-in-law who has an early and aggressive form of it.  Meds are helping but still, it's a horrible disease and he's such a great guy, we'd love for there to be something that does more to counter the effects.

[NoStacheOhio]

Thank you! We would be at Emory -- about 4 hours from where my parents live, but Dad's regular PD doc is there too so they go every few months.

Wonderful to hear your see such good results. We are in the phase of being cautiously very hopeful and trying to balance that with the tradeoffs.

Unrelated to DBS, has your dad done anything with exercise?

http://www.pdf.org/en/parkinson_exercise_impact

Not trying to dissuade at all, but it can give patients symptom relief, at least temporarily. It might be worth trying while he's waiting for the surgery.

I know one of our docs did some experiments, and somehow ended up finding that tandem bicycling was really helpful, because the non-Parkinson's rider was able to set a brisk tempo, which pushed the Parkinson's rider more than solo bicycling would, and they saw greater improvement.

[cheddarpie]

Thanks and sorry for the belated reply.  Yes, he's doing exercise -- not as much as he should, of course (I don't either!), but he works with a PT twice a week and does Wii games everyday, which have been one of the best (and most surprising!) activities for his symptoms.

Thanks for the support, everyone.