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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