September 5, 2024 - 8 weeks post surgery When asked "How are you doing?" the standard american reponse is "Fine" or "Great!". have you noticed that anything less seems to make the conversation uneasy on both sides? (Try it out with someone to see for yourself). My frequenr responses these days are "OK" and "hanging in there". Why? Because social conventions of "great" and "fine" don't apply when you look like Eleven from Stranger Things and walk like Uncle Fester (The Addams Family). Since the walking video on July 24, it's remained the high point of my physical recovery. Looking for solutions to the dystonia in my upper body, my legs and feet can go purdy fast...but its difficult stand up fully even though i know well that it would help my balance tremendously. The involuntary tension in upper body needs to release before that work can be accomplished. My neurologist considers my case to be complicat...
June 20. 2025 Forgive me for not saying "happy anniversary, dbs" or gushing about how amazing it is to "have my life back" as every dbs patient seems to say in their own way during their testimonial. its a long gap in the blog timeline is because I didn't want to chirp about how i tested another ten dbs programs and another and another testing over 100 major combinations. I tracked symptoms and dopamine doses religiously, hopeful that we'd find that proverbial needle in the haystack. But i felt like no matter what we did my crushing dystonia was determined to put huge pressure on the back of my neck. It is an involuntary muscle contraction that can only be described as torque. To be fair the symptoms in my feet were not horrible except for freezing in tight spaces and corners, the dbs is pretty good at activating my feet. But, we have not been able to find a program that does the same positive neural connection work for my upper body. This leaves me (...
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