Tuesday, February 11, 2014

DBS Programming: Fine Tuning

It's February 24, 2014 and I am back in Tucson, Arizona to see Dr. Sherman for some DBS programming. We'd driven over the night before because he wanted to see me off my Parkinson's disease medications. We did the usual walk up and down the hallway, finger taps, leg and foot taps and then he had me try to write a simple sentence. I did fairly well on everything but the writing. My hand no longer shakes when I try to write, but it seems like I have no motor control at all. I think my hand has become dyslexic. 

He asks me how I am sleeping (6-7 hours a night), if I have trouble turning over in bed (no), if I am having any balance problems or had any falls (not yet). He asks about my depression and I tell him, truthfully, it is gone. He asks me how much Parkinson's medication I am taking and if I have enough refills. 

I tell him I have been walking almost every morning, but I still get fatigued in the afternoons and usually take a nap. He says I am doing extremely well considering how long I've had Parkinson's.

He asks me if I have developed any new problems since my last visit three months earlier. I tell him yes, my speech has gotten a little worse. The carbi/levodopa helps the upper lip curl but I am still dropping consonants and slurring my words.

He decides to leave my "A" setting where it is and gives me a new "B" setting to try when we get back home. Hopefully, the "B" setting will help with the speech without making everything else worse.

We set a follow up appointment for July, grab some lunch and head back home to Yuma.

Over the next few days, I try the "B" setting, but it doesn't seem to help my speech and my motor symptoms worsen, so I go back to "A." We keep in touch via email and he suggests I try turning my unit off when my speech is at it's worst and see if it improves. It does not, which probably means the speech problem is just a normal progression of the disease and not caused by the settings.

I can tell my Parkinson's has progressed, even though most of my motor symptoms (rigidity, slowness and tremor) are under control. When I turned the unit off, for the speech test, it was only a matter of minutes before I felt my whole body stiffening and within 30 minutes, I was moving very slowly (bradykinesia.) I was glad to be able to push the gray button and have it come back on.

I guess I can finally say, without any doubts, DBS was the right thing for me to do!


  1. Thank you for sharing your story. My daughter, 17, is 15 days post stimulator implants and programmed on July 10. So far, so good.