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Deep Brain Stimulation and Parkinson’ s
“ As care partners we have to accept that it’ s not about us, and it never will be.”
Stewart R., father and care partner of Jessica R.
The day of Jessica’ s Parkinson’ s diagnosis in August 2014 was the worst day of my life. She was our oldest child, but she was only 24— how was this possible? We felt completely obliterated. We couldn’ t even drive ourselves home.
Jessica is the toughest woman I know, incredibly courageous, but as years passed the quality of her life declined so much. She decided she’ d had enough of that life and would go for DBS surgery. It was scary as heck— it’ s brain surgery, after all— but she was determined.
We were all together at the hospital for Jessica’ s procedure. Just as she went in, each of us received an email from her— she’ d scheduled it to arrive right then.“ Don’ t worry,” she wrote,“ It all will be fine.” She thanked us for our support, even shared her dreams for after the surgery.
And it did go fine, but the recovery was difficult. We didn’ t know that she’ d need so much help. There are actually three procedures: the initial placement of the leads, the input of the battery 10 days later and the programming a week after that. Jessica had to live with all her symptoms until then.
If that August day had been the worst, then September 17, 2021, was the best ever. She went in for her programming, dyskinetic— and suddenly it all just stopped. Everything. It was like a miracle, a dream. When we drove home, I kept looking in the rearview mirror to see if it had worn off.
Stewart R., with his daughter Jessica, knew her determination and courage would carry her through having DBS.
I’ ve learned that it’ s important to educate yourself and always be part of medical conversations. Everyone is emotionally engaged and they’ ll each hear different things. The more questions you ask, the more meaningful the conversation will be when you leave.