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Dear Listmembers: ----- Original Message ----- From: Jackie G. <[log in to unmask]> To: <[log in to unmask]> Sent: Sunday, February 20, 2000 6:16 PM Subject: Off Time, describe feeling? >Bob did have right side STN DBS on January 13th. The doctor only has his power up >to 1.8. That is as high as they would turn it on our first post op visit. We will go back on >2/28 and hopefully the Dr. will turn it up to 3 (that is what they needed in the OR). They >do things slowly down here in FL! Here are some notes and things to remember about stimulator settings for those that are new to the experience. 1. The net result of the stimulation is the "sum" of the stimulation AND the medication you are taking. You may have to adjust your medication, perhaps on a daily basis, to match the stimulation (same as before). You may eventually take your medication "by feel"--- how you feel. 2. Keep notes of your daily condition. You experience it 24 hours a day ---- your doctor does not. 3. Under-stimulation can cause "off" times. Over-stimulation can cause "off" times. You have on/off control of the stimulators with the magnet. If the stimulation does not seem to be effective turn off the simulators and make notes of whether your condition gets better or worse AND how quickly your condition changes --- time it. Turn on the stimulators and AGAIN take notes of what happens. 4. Continuous vs. Intermittent stimulation THIS IS BASED ON OUR EXPERIENCE of nearly 2 years and does not agree with the experience of other patients. But I think it needs to be considered as an option. We found, shortly after surgery, that constant stimulation caused "off" times and freezing. Shutting off the stimulators resulted in improvement of movement for a time. Turning the stimulators off and on would result in a better result. We asked a lot of questions and found that the Medtronic stimulators can be programmed to turn on and off automatically. We eventually came up with the following timing scheme: Stim #1 ---- ON for 15 seconds; OFF for 30 seconds. Stim #2 ---- ON for 15 seconds; OFF for 30 seconds. Turn Stim #1 ON Turn Stim #2 ON about 23 seconds later The result is: Stim #1 ON for 15 seconds No stimulation for 7 to 8 seconds Stim #2 ON for 15 seconds No stimulation for 7 to 8 seconds (cycle then repeats itself) Each side is stimulated only 1/3 of the time. But, because of "cross-talk" there may be some stimulation to the other side (same side the stimulator is installed) of the body. (There are numerous other options) We have found that, in Steve's case, EVERY setting using continuous stimulation began to deteriorate by day 6 or 7. The same setting using intermittent stimulation could work effectively for several months. This is our non-medical opinion of why this is effective. (We had one doctor comment about whether this was medicine or engineering) Anyway, the brain is a very "plastic" organ that is continuously "learning" and attempting to maintain an "equilibrium". It has learned how to "cope" with the PD condition. When you insert stimulation into the "equation" the brain attempts for finds a "work-around" for the change. IF the stimulation is continuous the brain can work continuously to find that "work-around". BUT, if the stimulation is intermittent the brain is continually interrupted in its "search" and can not work out a solution. Therefore ---- the intermittent stim setting lasts longer than a continuous one. 5. The medicine you take affects BOTH sides of the body. The stimulator affects only ONE side. The medicine affects each side of the body differently because of the differences in the way PD has progressed. A dose that works effectively for the non stimulated side may not work effectively for the stimulated side. Therefore, after you find a dose that works well on the non-stir side you will have to attempt to adjust the stimulator to that level of meds. The advantage of 2-sided stimulation is that you have more options to achieve that balance. 6. Remember, your PD symptoms will continue to progress with time (the same as with meds only). That advantage of electronic stimulation is that you can change settings as the disease changes. Other surgical procedures do not afford you that option. == I have witnessed first-hand the stir setting procedure (US style) for nearly 2 years now and could write a book. It has been quite an experience. The results have been UNBELIEVABLE!!!!!!!!!!! BUT IT IS NOT A CURE!!!!!!!!!!! The patient still has PD. Paul Fahr