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MIVEGO

GPI DBS

2 posts in this topic

Dear Doctor Okun,


 


I´m male 53 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 am 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 right 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,


 


Now my setting parameters are:


 


Channel   Impedance   Amplitude   Frequency   Pulse width


      1              284          1.0 – 5.5           200              200


      2              234          1.0 – 5.5           200              162


 


In order to fix these problems I have used a method to take my meds since more than 4 years and that is to take only the azilect pill in the morning and not taking any meds during the day until 8 or 9 pm (using my amplitude setting at maximum programmed that is 5 in both sides): 2.5 pills of levodopa/carbidopa 250/25, with this unique dose per day, kicks me to ON after 1 hr. causing me only one diskinesia which I can control reducing the amplitude to eliminate it.


 


 So I feel the following benefits of this method:  no fluctuations on/off, I have bradykinesia but I can move, 0 diskinesias during the day, better face expression I can smile, no


frequent adjustments with my patient control, more stability during almost all day.


 


Disadvantages :  I feel weak, I  have difficulties for walking (drag my feet) and also i get tired with short distances, and my speech is slurred and with low volume. When I feel very weak I take 1.5 pill of levodopa before my meal and when it kicks me ON weakness disappear, I improve my walking but my speech worse and I can´t speak.


 


Could pramipexole or rigotigone patches improve my speech or my gait?


 


Secondary effects? 


 


Any setting parameter to adjust?


 


 


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


 

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Interesting way you have worked out for improving your symptoms.  It could be that the leads are suboptimally placed and you may want to discuss with your team.  Sure, you could give an agonist, a patch, liquid sinemet or the duopa pump a try.  Watch out for impulse control disorders (shopping, gambling, eating, etc.).

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