Get With the Reprogramming

I was frustrated with the 5-6 programming sessions from May 2005 to May 2006. I was desperate to get the deep brain surgery (DBS) system programmed properly (see Get with the Program).

During that period, I felt the programmers had given up on me, and as a result, I had given up on myself. From May 2006 to May 2007 I had no programming adjustments. I was ready to have the whole damn DBS system pulled out of my body, until I met Dr. Olga Klepitskaya.

Despite my attempts to get the programming records from three facilities so that Dr. Olga wouldn’t have to reinvent the wheel, no records arrived by the first reprogramming session, and no records have arrived since then.

I appreciated Dr. Olga’s attitude of “we’ll go with what we have” in terms of proceeding with the reprogramming. Prior to the first reprogramming session, she performed neurological testing and videotaped me with and without meds, with the stimulator turned off and on.

I had my third reprogramming session with her two days ago. When I walked in, she scrutinized me as I walked down the hall and commented that I had dyskinesia in my upper body. She pulled out her controller that made my hand-held remote look puny by comparison. She made new programming adjustments. My dyskinesia disappeared.

Dr. Olga instructed me and my husband Tom to walk around the hospital campus and return in an hour. She wanted to make sure that her adjustments lasted and didn’t cause any bad side effects.

Tom and I walked down to the cafeteria. When I opened my mouth to speak to Tom, I had difficulty. It was such an effort to get the words out. I could hardly hear the few words that did emerge. My voice was so quiet, and my words were slurred.

After an hour, we went back up to follow-up with Dr. Olga. I mouthed to Tom, “Tell Dr. Olga that I lost my voice and that I want it back.” She teasingly questioned, “Well do you want to talk with dyskinesia or not talk without dyskinesia?” I responded, “I’m greedy. I want to walk and talk with very little dyskinesia.” She smiled and once again produced her controller and made the programming adjustment based on a new tip she recently learned from her DBS educational group in California.

Dr. Olga also made major adjustments to my meds with the goal of being totally off of Sinemet, the cause of the dyskinesia. I look forward to parting company with bittersweet Sinemet.

Two days later, my voice is stronger and clearer than ever, I walk with a good stride with just a touch of dyskinesia. And I also experienced an unexpected benefit: I can hold a pen and write legibly. I hadn’t mentioned to Dr. Olga that I secretly hoped that I could write legibly with a pen, fearful of sounding really greedy.

As I complete this posting, I am overwhelmed with emotion. I am grateful that Dr. Olga hasn’t given up on me and that I haven’t given up on myself.

Comments

[Joe]

That is awesome news! It's great to hear success stories. It helps me to keep a positive attitude. I am so happy for you.