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Deep Brain Stimulation and Parkinson ’ s from the outset was helpful for me and for Larry as he made crucial decisions .
On the day of surgery , it helped to anticipate what we might need . What people or practical tools may be helpful to have handy ? How do we want to communicate with people wanting to be informed ? What boundaries will help us stay present with Larry and each other , and remain as calm as possible throughout the day ? We set most of that up ahead of time .
Mike : You have to become a patient advocate during this process . My almost 40 years in business helped a lot . You have to advocate for your loved one and sometimes demand answers . For example , my wife had six doctors at one point — a neurologist , surgeon , headache specialist , dizziness specialist , DBS programmer and psychiatrist . Most of them had never discussed what was going on with each other . When I asked why , we were told medicine works in silos . At that point , I demanded they all meet , discuss her case and come back to us with agreement on the next steps . And don ’ t be afraid to get a second opinion from a DBS expert when things aren ’ t going according to plan . Donna ’ s leads were actually in the wrong place and the procedure had to be redone , which we didn ’ t know until we sought another opinion . comes to the different devices and the future of those devices . Make sure to ask all the questions and be your own advocate . Explore other facilities where DBS is done to make sure you are at the right facility for you and family .
Rebecca : I find with more information I become more comfortable with something as intimidating as a loved one having brain surgery . So , I informed myself . Do your research . Talk to people who had a good experience with DBS and their care partners , as well as people who didn ’ t and their care partners . Ask your surgeon and surgical team all your questions and make your voice , as a partner or family member , heard . Make sure the surgical and medical teams know you are a critical part of your loved one ’ s support team so they include you in conversations and decisions . Find out what communication may look like on the day of the surgery and how you might prepare accordingly . Know what to expect , and then prepare to pivot when the unexpected occurs .
Talk with your loved one . Be honest about your reactions , hopes and fears , and give them space to be honest about theirs . Commit to keeping these lines of communication open , compassionate and supportive .
Mike : Prepare yourself for a range of possible outcomes and think about how you might deal with them .
What advice would you give to other loved ones ?
Constantin : Know it ’ s not a linear process and it can take all sorts of turns . Prepare for the possibility of your loved one getting worse before getting benefit .
Kelsey : DBS is a major decision for the person with PD and their care partner . My dad and family were very lucky in the process and outcome . However , we have heard from many others who had very different experiences . My advice is to research as much as you can , especially when it
Do you feel that DBS has been helpful ?
Constantin : I feel that DBS has been beneficial , as Bernard is able to walk on his own without any support most of the time . I think we both expected much more benefit by now , but there are still many adjustments that can be made to improve his mobility and overall condition .
Kelsey : Absolutely . It improved my dad ’ s quality of life for many years and gave him back control of many things he had lost . When they turned