The Parkinson’s patient decides to have DBS surgery. Being an experienced and educated consumer, she does extensive research. Who has done the most implants? Which is the highest-rated hospital? Do they have the newest technology? Will her insurance cover the procedure? She identifies the surgeon and facility that meets all of her criteria, and has a smooth and successful surgery. The DBS has been implanted perfectly, and the surgeon’s piece is finished.
Now what?????
Unlike most surgical procedures, the closing stitch is just the beginning of the DBS journey. Once implanted, the device has to be programmed. DBS programming is a time-consuming and delicate process involving a great deal of interaction and communication between clinician and patient. There are varying levels of experience and training among the facilities associated with the implanting surgeons, and there has been little standardization in the practice of programming.
So, who are the programmers, and how are they trained?

Many of the comprehensive DBS centers have nurses providing the programming; some neurophysiologists program, and most movement disorder specialists have a working knowledge about programming, although the time-intensive nature of the work makes it difficult to integrate into their daily practice. Ocassionally, when there are no trained programmers in an area, the local Medtronic representative will provide the service. Medtronic provides a basic beginner’s training session, but after that, the programmers are on their own to seek out more advanced training. Some will visit the more established centers to work with experienced programmers, and others do their best to figure it out as they work with the patients.

Recognizing this gap in service to the DBS community, Judy Blazer of WeMove joined forces with Margaret Tuchman and Carol Walton, to start an initiative for education and information exchange. This has resulted in the programmers forum, a part of MDVU (Movement Disorders Virtual University), providing a place for experienced and novice programmers to exchange information, ideas and knowledge. In its infancy, the forum is, at this time, open only to practicing clinical professionals. As it evolves, it may also include patient and caregiver interactions. Kudos to Ms. Blazer, Tuchman and Walton, for having the vision, making it happen, and providing a valuable and much needed tool for our community!

Is it black magic, or simple physics? The answer is... both. Programming is 30% physical science, 30% listening and observing, 30% clinical movement disorders training, and 10% creative thinking. Here are some (hopefully) comprehensible answers to frequently asked questions.

What do amplitude, pulse width and pulse rate mean? If you picture in your mind an EKG waveform, the amplitude is the height of the spike, the pulse width is the length of time it stays at the top of the spike, and the pulse rate is the number of spikes per second.
How do you decide what parameters to set? There are pretty well established starting parameters that researchers agree are effective for a lot of people with similar symptoms. But one size does definitely NOT fit all. Most programmers will start with a conventional setting, and then take it in whatever direction the patient needs to go based on responses and side effects.
What are unipolar and bipolar? To create an electrical current you need a cathode and an anode. A negative and a positive. The generator battery pack in your chest is referred to as the “case.” The electrode in your brain has 4 contacts: 0 1 2 3. The deepest one is 0, and the top one is 3. Unipolar means that the case is positive and one or two or all of the contacts are negative. For example, case + 0-. This creates the widest current spread. For some, unipolar is too strong, and bipolar is a better option. This takes case out of the equation, and focuses the current between two contacts — for example, 0- 1+, or 1- 2+. You can reverse the cathode and anode for an even weaker current in an extremely sensitive patient.
How much time is programming supposed to take? Programming takes as long as it takes to achieve the optimal setting. This may not be achieved in one visit. Sometimes it is a “slam dunk” on the first try. For most, however, it is an ongoing process. It’s important that the programming provider know your symptoms intimately and do a practical assessment of them at each visit. If you play the guitar, bring the guitar. If you have trouble typing, or writing, whatever, test these activities throughout the process. Always take your medication after programming and stay put until you are “on” to make sure you do not get disabling dyskinesia from the combination.
Why does the effect seem to fade out? You leave the office feeling great, and one or two days later, or even later the same day, you’re right back where you started. This is a tough one, and frustrating for all. But remember with your medication, how long it took to find the right dosage and combination. It’s a process of trial and error... and patience. Having a response at all means you are very close, you just need a little more, or a little less of one or two or all of the parameters. Keep working at it, and don’t give up.