Monday, May 30, 2022

Quick Phone call

Well I thought that it would be a longer phone call, but health care professionals are stretched so thin that they don't have time to be thorough anymore.

Heather called this morning and we bumped up the level from 0.5mA to 1.0mA. I had tested this level earlier for a few minutes and knew there would be an effect. And then, just as quickly as she came, she was gone. The next appointment will be in person.

So - how do I feel?

At 1.0, I have dyskinesea very similar to when my first dose of the day is kicking in. It was a little difficult to deal with, so I dropped it to 0.8, then raised it back to 0.9. I'll try to get it to 1.0 in a while. 

We're making progress!

Monday, May 16, 2022

Programming - Baby Steps

 Judi and I were up bright and early this morning (6:30am) to be at the hospital for programming at 9:30am. Good thing too, as we arrived at the hospital at 9:20.

The programming process consisted of setting the values of each probe independently and checking how I felt and what my PD symptoms were. The settings could completely remove my tremor, etc. and then could turn in to double vision, tingling, hot flashes, etc. when pushed higher.

They then packaged the settings and set the output to 0.5 (mV? - not sure of the units) and stated that we would leave it there for two weeks to get my brain accustomed to being stimulated this way.

The next meeting will be over the phone and we will up the mV setting and re-evaluate. They also reduced my medication frequency from 2.25 hours to 3.5 hours. This see-saw approach of "raise the stimulus and reduce the medication frequency" will continue until we find the right settings for me.

I had forgotten to take my meds along today (the testing and programming took place unmedicated) as I had asked Judi to hide them from me so that I didn't take any without thinking. They got me two sinemet to get me home. Unfortunately there was a delay on the 401 that lasted an hour or more so I went "down" hard and Judi had to finish driving home.

We're home now, and I'm eager to see how the new schedule works. I think that how I feel overnight will be a good indicator of what to expect from these settings.