Slowly but surely.

 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 complicated because the typical signals area't there. Many with PD have dystonia (rigidity) when they are undermedicated and dyskinesia (twisting movements) when they are medicated to the top of their therapeutic window.   So, in clinical observation, doctors take patients to dyskinesia an then dial it back from there.   I dont have dyskinesia.  So my response goes from dystonic to *more*dystonic{losing speech and fine motor skill as the medications increase in my brain wit.h every dose It's hard to know where I am on the curve except for the early hours of the morning.  In this case, the dbs plus whatever dopamine remains from my bedtime dose allow me to stand pretty straight.  this is the best part of the day. More isn't always better,

So, ive been playing with a lot of DBS programs. My doctor uploads them to my DBS controller where she an set things like frequency and pulse widh of the signal; i can control milliamps within a range,  (My Quality friends out there will appreciate the number of permutations to test the greatest, most complicated of systems - our brain).  It's a daunting task and i'm trying to focus only on motor skills.

Yes, it amazes me that data isn't readily available to assist us as we test out variations.  Every DBS "customer" has an app in their hand all day long,  How about some ratings overlay, Abbott Labs?   HIPAA SCHMIPPA... I'd waive my rights all day long to participate in data sharing of that quality.

Onward i go looking for the optimal combination ...

Yes, it took me a year to post this after writing it.