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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 .