Phase II...step by step

Sorry for the gap in information...our best intentions were to post earlier, but somehow that didn't quite happen.

We're now in a new phase of the process, having the DBS device "turned on" on April 18. That was an interesting process as there are four contact points on the DBS lead, and those can be programmed at different levels individually or together. The first programming session ran for a couple of hours with each point being tested independently and at varying strengths. At each strength, Adam performed different tasks, such as pointing and moving one finger, moving his hand from side to side, moving his foot, etc. It was a very meticulous process. The nurse, MaryAnn, ran most of the programming tests, with Dr. Marks poking his head in periodically to check on the progress. Once the testing was complete, the optimal setting was identified and the device was set to that setting. While the change wasn't nearly as dramatic as we might have hoped, we were informed that with dystonia it is very common to take weeks or even months to realize the full benefit of the DBS.

Adam did feel that there was a change in the muscle tone in both hand and foot as a result of the DBS being activated. Since he was likely to want to take more steps, we celebrated that evening by going shoe shopping to locate some shoes that provided more ankle support. The next day we had a brief follow-up visit with the neuro-surgeon as well as with the movement team, and were released to head home with instructions to begin both physical and occupational therapy (PT and OT).

We were thrilled to locate both PT and OT in one location...and in Tahlequah! Even more exciting was the fact that we were scheduled with an OT that we knew a little...the dad of one of Matthew's good friends. Adam started a three-times-per-week schedule of both PT and OT, with home exercises to continue the work. With several sessions under his belt, he is seeing improvement in both his leg/ankle/foot and arm/wrist/hand. Things are not moving as fast as any of us would prefer, so we are learning to be patient. Both of his therapists are pleased with his progress, and so we trust that they are seeing the subtle changes that are hard for us to notice. Adam is standing upright some each day, and even taking supported steps. The goal right now is to work on good positioning while standing, stepping, and sitting...getting his muscles to re-learn positions that are most helpful in order to move forward with daily tasks. Essentially, the DBS interferes with the neuro-messages that are pulling the muscles into contracted positions, and now the brain and muscles are re-learning the communication to return the muscle control to Adam's conscious choice.

The next visit to Fort Worth will be on May 29, and Adam's progress will be checked and the DBS programming adjusted as needed. We keep moving forward!