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Dbs Gpi and avoiding fluctuations

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Dear Doctor Okun,


I´m male 50 yrs. dx. PD since 2002. I had my dbs on gpi surgery bilaterally on august 2010, I was implanted a Brio system from St. Jude, I was taking 1 Azilect 1mg. pill everyday and sinemet (250/25, this is the only available here in México city) 1/4 at about every 1.5 hours, this caused me very disturbing symptoms like frequent on/off fluctuations, in ON, sometimes diskinesia (much tension on my left arm and I can´t speak) so I have to use very frequently my patient control to reduce the amplitude values, and when I feel the OFF is coming, again I have to use frequently my patient control to increase the amplitude values and take my next dose of sinemet, and repeat these cycles during all day,


My setting parameters are:


Channel   Impedance   Amplitude   Frequency   Pulse width

      1              332          1.0 – 5.0           180              200

      2              234          1.0 – 5.0           180              162


Now in order to fix these problems I tried a new method to take my meds and that is only the azilect pill in the morning and not taking meds any meds during the day until 7 pm (using my amplitude setting at maximum programmed that is 5 in both sides) 1 pill of stalevo 50mg and another stalevo 50mg. at 9 pm, this last dose, cause me only one diskinesia in the whole day. So I feel the following benefits of this method:  no fluctuations on/off, I have little bradikinesia but I can move, 0 diskinesias during the day, better face expression I can smile, no frequent adjustments with my patient control, much more stability during almost all day. Disadvantages : I  have difficulties for walking (drag my feet) and my speech is slurred and with low volume, I have now 3 weeks with this method and I called my neuro since the first week and he was surprised with the reduction of my levodopa intake and my syptoms, and he recommend me that if I feel better with this method to be constant with the doses of meds I´m taking.


I know that changing my prescription meds by myself is not a good idea, but also think if I stay the same I will feel the same, so I tried this and I think is working for me so the only trouble now to feel better is what can I do to correct my dragging walking and my slurred speech and low voice? What can you recommend me? Any setting parameter to adjust?


Thank you in advance for your comments and for all your help.

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I think that many times the patients (you yourself) will find the best dosages and most appropriate timing by trial and error under the care of your doc.  It sounds like you are doing great.  Voice and walking are hard to get with meds or DBS in many cases and one suggestion is to add physical and voice therapy.

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