Steven, I am so happy to have learned of your "Miracle DBS" experience. I have had recent experiences related to the procedure that I have decided to share with the forum.

(Steven and I met in person in February, 1906 at the First International Parkinson's Congress in Washington DC after first getting acquainted on this, or a related on-line forum a couple of years earlier. I am just delighted to hear about his astonishing DBS experience!)

About two years ago the Neurosurgery Department in the LSU School of Medicine in Shreveport initiated a program in deep brain stimulation. This is my "home" where I served as a faculty member for most of my career while teaching and conducting research in Biochemistry,

The program has already established an excellent reputation in this region, having brought in outstanding young talent for their team. This team has not had the time to accumulate more than 30 or so DBS surgeries, but I know personally three of the patients, all of whom have had excellent results in treating their PD symptoms.

Last summer I initiated the process of becoming a candidate for DBS surgery by this team. I completed the full process in late November, anticipating that my procedure would be done while asleep with the GPI as the target. At the final extended consultation with the neurosurgeon, recognizing that the minimal threat to my remaining cognitive ability constituted more risk than I was willing to allow, we both agreed that I should not undergo the operation at that time, with the possibility of a decision to yet have the operation before the end of June, when I will be 78 years old.

The decision reached to not proceed with DBS is still the best, in my estimation.

Robert

Hi Robert..I was a pleasure to met you at the WPC ..We were looking at art or something, and we happened to make eye contact, and recognized each other by our avatars on the forum here..I enjoyed our conversations, and I hope you are doing well

I also have another unexplained phenomenon going on..I still have some difficulty in the morning getting around the house, freezing, etc..My theory is that freezing is a psychological dysfunction..In my case for what it's worth, everytime I am about to enter a door way or a narrow space, something in my brain stops me dead in my tracks..It feels like some kind a fear, or anxiety..I tell myself that going through doorways, narrow spaces and either approaching the refrigerator, the kitchen counter, a chair or whatever the object might be, something in my mind tells me, that the only way I am going to get close to an object is to kneel down and walk on my knees the final 3 feet..I am not a medical anything..I am just a guy who thinks outside of the box

However, that is not the phenomenon that I wanted to share..Since DBS, this has happened a few times, but this morning it was very profound, and very real..My day starts with mild, or no dyskineia when my morning meds are kicking in to start my day, and mild to no dyskinesia at night when they are wearing off

I woke up at 5:00 am this morning..Usually I used to wake up around 7:00 am..I did not take my meds until 7:00 am this morning..Here is what happened..At 6:45 am I started getting some mild dyskinesia..I could feel my legs starting to loosen up, so I got up and walked into the kitchen, without any freezing, or problem whatsoever..But when I got 3 feet from the couch where I was sitting I froze up, but I was able to take the last 3 steps and sit down..This was with no medication in my body for 12 hours, as well as absence of stimulation because my DBS has been off for 4 months since the surgery

This has got me very curious..MRI scheduled for June 3rd to see if the DBS team can find a solution to this mystery

Any thoughts on this Robert?

Hi Steve;
The great variability in the degree of severity of PD symptoms and the rate at which they progress is proof to me that each of us probably has our own unique disease! Somehow, although freezing while approaching a doorway or other object has not been my experience, falling certainly has. My usual one or two falls per month has recently increased to three or four, the latest being a spectacular full-length face-down performance while crossing a low-traffic street at the medical center. So far I have been spared broken bones by my slight build and strong bones. I've just begun physical therapy in an effort to control my high center of gravity and improve my posture. Tall stature exaggerates the stoop!
About your early-morning freezing experience, I have only one suggestion; have you ever used a cane or hiking stick to relieve any balance anxiety
under those conditions?
Just a thought...

It only happens when I'm off Robert..I have tried canes and walkers..They don't work for me