On June 25th Lori will undergo Deep Brain Stimulation (DBS) to treat Parkinson's disease. This blog will keep you updated.
Then She Walked
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Right out of the neurologist office and it was overwhelming for all of us. July 9th was programming day. Her device will continue to be fine tuned over the coming weeks. More to come.
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...
Hiya - Lori here. Most of you know that I have been grappling with Parkinson's since early 2020 and before when my symptoms had no name. There have been many stages from early denial to recent realizations. My journal reflects on the loss, grief, optimism, pessimism, potential causes, potential cures, eastern thought, western science and the kindness of others. More on that later... The current score is LORI - X, Parkinson's -X+1. over the last year, I've been focused on vibrotactile gloves. It's been a great project with a lot of positive result for me. My "on" periods have been greatly improved, but simultaneously "off" windows have become more frequent and much more severe. It's a problem. DBS isn't a cure, but it should help with the severity of the on/off fluctuation. I hope that it allows for greater functionality, alleviates the dystonia in my upper back & neck and allows me to move more. The risks are that it may worsen b...
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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