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