45 cause others to emerge like dizziness, headaches or disorientation, as it did for Donna. Also how important targeting— the exact spot in the brain to insert the leads— is. Targeting is the whole game and one millimeter off can be hundreds of miles in the brain.
What would you have done differently?
What was helpful during your DBS journey?
Constantin: After facing significant challenges during the initial months of programming, we switched to a different DBS neurologist who had a much better understanding of Bernard’ s condition and was able to use her experience to change the approach and show us the light at the end of the tunnel.
For Loved Ones
Constantin: I would have been more inquisitive to gain a clearer idea of the entire process postsurgery, particularly in the months after, and to get an idea of what the first two to three years with DBS might be like.
Kelsey: I would not change anything. We were very lucky in many aspects, including the surgical team and outcome. DBS immediately helped with my dad’ s symptoms and without as much back and forth in programming as many people go through the first six months.
Rebecca: Looking back there isn’ t much I would do differently, except perhaps worry less. And I’ m not sure that’ s realistic. There are risks involved in DBS and not worrying about your loved one undergoing brain surgery is like asking yourself not to be human. The reason for my response is that I found myself asking“ What was I so worried about?” during the days and weeks following Larry’ s surgery. While DBS is brain surgery and there are risks, it is not as invasive or frightening as it sounds. Recovery is typically easier than you expect. Larry was up, alert and ready to walk out of the hospital the next morning. While I don’ t blame myself for worrying, hindsight has offered me the perspective to see all the needless stress I took on.
Mike: The choice of where to have the surgery done is critical and unfortunately most people don’ t have much flexibility in this. But if you do, choose wisely. Look into several hospitals if you can.
Kelsey: My parents had great communication with a patient advocate, who had PD herself. It was wonderful to have that guide to help through the process and decision. Also, through DBS my dad was connected to a movement disorder specialist who took the time to get to know him and my mom, his primary care partner.
Rebecca: The most valuable thing we did was manage our expectations. We did a lot of research, talked to a lot of people and had a fantastic and experienced surgeon who offered bountiful— and realistic— perspectives. Because of this we went into the process eyes wide open, not expecting a miracle cure or to turn back time. We knew what benefits we may be able to expect and what results we’ d like to see. We also understood the symptoms that likely would not be improved— non-motor symptoms, neuropathy and changes in executive function.
Larry and I communicated openly and consistently throughout the process. We both were at every appointment and researched the details and risks together and on our own. We talked about our fears and how our lives would or could be affected. This made all the difference to my comfort level and to his. As a care partner, however, it was helpful for me to understand that ultimately the decision about whether to move forward with DBS surgery was Larry’ s. My opinion and comfort level mattered to Larry and to the process, and I readily made my feelings known, but I decided early on that I would support whatever decision he made. Understanding this and owning this commitment