Completely true, GregD; Kate Kelsall at Shake Rattle Roll, for example, spent two years struggling with DBS and she thought it was a failure; she got it under control and leads a very active life - helping others go in for DBS. That kind of mentoring that she does is a big help, guiding people through the process. On the other hand, there are reasons to hesitate. It is one of a number of choices we have to make, with uncertain results. Kate's story shows that if you do have DBS, don't declare defeat if it is not great at first; she took two years to adjust and then went back out into the world full force. Other people benefit immediately. Others, it seems, do not benefit, and we all hope less invasive techniques will be found, but I visualize Beavis N' Butthead arguing over whether you want to be able to talk or walk. One could do each.
If that was an absolute choice, which would you choose? I would want to walk, simply because I have said more than enough for one lifetime, but I still want to walk in my forest every day.
I told my neuro that DBS would be much more popular if the remote control was not just ON / OFF. Add in Mute, Rewind, Fast Forward, Slow Motion and Spanish and it would get interesting.