It's been a year....

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 (painfully) pitched forward at the waist.  The combination of this plus the weight of my noggin hanging out there on top of my forward -thrust neck is very unbalancing.

The worst bits are the parts that prevent me from being me...like not being able to speak when i wake in the morning,to mumbling throw through the day and drooling when im at the dopamine level that prevents me from articulating any words.  It happens on the way up and down the dopamine curve, I have to pay attention to whether Im  going up or coming down...it's not easy to tell which.

I need to figure it out ...it could be poor placement of the dbs leads .   I had an MRI that shows the leads are close to the target,  Close enough that no one wants to "revise" their placement, but also close to a side area that interferes with speech.  

As part of my search for answers, I went to UCSF, one of the largest movement disorder clinics in the world.  The doctor I was assigned is working on adaptive dbs....he has seen a lot .  this started my non-diagnosis trend as he and his team mate hypothesized that I might not have Parkinsons.  The problem with this is that Parkinsons is the best of the worst.