In 2020, I underwent bilateral deep brain stimulation (DBS) surgery of the subthalamic nucleus to mitigate the symptoms of Parkinson's disease. In the month following the procedure, multiple symptoms were much worse than pre-surgery. I had severe difficulty swallowing, speaking, thinking, and walking. During the worst period, I was unable to safely eat food due to problems choking.
To help identify a path forward, I commenced reading relevant material to educate myself on DBS programming. After six months working with my doctors, I achieved a positive outcome from DBS. Friends and family have encouraged me to share my experiences, hence this website.
In my opinion, there are opportunities for greater patient empowerment during DBS programming. Empowerment requires knowledge; unfortunately, I have not been able to identify an online explanation for DBS programming suitable for a non-specialist. Therefore, I have drafted two articles, one to introduce DBS programming, and a second to describe my experience as a case report. I also organised a webinar with colleagues at Parkython to explain DBS. (YouTube clip below)