helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    

MIVEGO

Members
  • Content count

    12
  • Joined

  • Last visited

Community Reputation

0 Neutral

About MIVEGO

  • Rank
    Member
  1. 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
  2. Dear Dr. Okun, I´m now experienced the worsening of my walking and my speech. You mentioned me that Walking, talking and thinking are three symptoms that occur with disease progression and may stop responding to medications and DBS. So then what can I do, any recommendations ?
  3. If I try using the patches of Rotigotine just to see if they help me in someway, how much time do I need to use them to see if the effect is positive or not? Any comment about my last question : Are any risk for me if at bedtime I turn off my neurostimulator? Thank you for all your help.
  4. Dear Doctor Okun, I´m male 51 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, Now my setting parameters are: Channel Impedance Amplitude Frequency Pulse width 1 324 1.0 – 5.5 200 200 2 324 1.0 – 5.5 200 162 In order to fix these problems I have tried a new method to take my meds since more than 1 year 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 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. At this moment I feel full of energy and I use this time to exercise and I run almost daily for 20 min. So I feel the following benefits of this method: no fluctuations on/off, I have little bradykinesia 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 visited my neuro last month he told me he wants to write a case study about what I´m doing and he recommend me to reforce my daytime to use Nubrenza 4mg (Rotigotine patches) daily, I want to ask you your opinion from taking this drug, what can I expect from using these patches? Could these drug improve my speech or/and gait? Secondary effects? Any setting parameter to adjust? Are these setting parameters high? If so the rechargable battery is not going to last 10 years? At bedtme if I reduce the amplitude from 5 to 3 it helps someway the battery to last longer? Are any risk for me if at bedtime I turn off my neurostimulator? Thank you in advance for your comments and for all your help
  5. Dear Doctor, I am male 51 dx PD since 2002, now I´m taking Azilect 1 mg. daily as recommended since 2 years (plus sinemet 250/25, 2 pills during the day), I had my dbs surgery in august 2010 bilaterally implanted in Gpi, my question is about what is really doing for me Azilect, I know it´s neuroprotective, and slow the progression of the disease, it´s really true? it has been demonstrated?. I don´t feel any effect of this drug nor side effects, and it´s expensive for me but if you tell me that it´s better to take it than not to do it, then I will keep taking it, but please I would like to know your reasons. Thank you in advance for all your help.
  6. 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.
  7. Dear Dr. Okun, Thanks for your answer and for your recommendations, as I mentioned before I had my consult with my Neuro last Januay 21, after I explained him my problems he decided to increase the frequency and pulse width the in my setting parameters, as follows: Channel Impedance Amplitude Frequency Pulse width (I can use my patient control) 1 332 1.0 to 5.0 180 200 2 234 1.0 to 5.0 180 162 but also, he reduced me my meds intake from: Azilect 1mg, Sinemet (250/25) which is the unique presentation available here in Mexico City 1/4 - 1/4 – 1/4 , alternated with Stalevo 100 mg 1 – 1 – 1, daily TO Azilect 1mg, Sinemet (250/25) 1/4 - 1/4 , alternated with Stalevo 50 mg 1 - 1 , daily. My problem now is that I followed the meds prescription as indicated at the maximum amplitude of 5 in both sides, the first 2 days I feel very good, but the 3rd and 4th day I started to feel very low without feeling the effect of these meds, so I called him and he told me to increase 1/4 of extra sinemet, even with that I feel very low (weak, without energy, I walk with short steps and my voice is also low volume and disarthic). I have no diskinesias and no fluctuations now, but each day that pass I feel weaker and more weaker. I think I have to increase my meds intake but I know that if I do it, diskinesias and fluctuations will come again. What I should do now?? what option is better??. Please I will appreciate a lot your recommendations, and thanks for all your help.
  8. Dear Dr. I`m male dx. PD since 2002 when I was 38 now I´m 50, in august 2010 I had my dbs surgery in Gpi, billateral I´m using St.Jude´s Brio system wich is rechargable. My left side is the most affected, my present setting parameters are as follow: channel Impedance Amplitude frecuency Pulse widh (patient control) 1 359 1 – 4.5 150 175 2 218 1 – 4.5 150 112 Now my most disturbing sympthom is diskinesia, next monday I will see my Neuro, but I´d like to take him your opinion, the last visit (June 2013) he prescribed me Azilect 1mg, Sinemet (250/25) which is the unique presentation here in Mexico City 1/4 - 1/4 – 1/4 , alternated with Stalevo 100 mg 1 – 1 – 1, daily. My present problem is that when I take my dose of sinemet or stalevo and when it kicks me ON, I feel a severe diskinesia (my left arm comes with a lot of tension and I have to put my arm behind my back and my hand moves involuntary) that sometimes I feel this even with the stimulator is turned off. Now I reduced my intake to Sinemet 1/4 – 1/4 alternated with Stalevo 100 mg 1 – 1 with longer periods between doses but still the problem exist, when the kick in to ON comes it causes me severe diskinesia and when this happens it´s hard to me to find a comfortable adjustment of amplitude in my patient control because if I turned it off or I reduced the amplitude I feel a severe OFF and if I increse it diskinesia comes again. Thanks for all your help, and for your recommenations in advance.
  9. Dear doctors, i am male 50 yrs, dx pd since 2002, i had my dbs surgery in august 2010, i use st jude brio rechargable system, with satisfactory results in general, at present i take azilect in morning and 1/2 sinemet 250/25 at 9:00, 14:00, 20:00 hrs, alternated with stalevo 100 at 11:00, 17:00, and 1 pill of clonazepam 2mg. to sleep. In two separate days i have taken 2 pills of clonazepam and i had sleep about 9 hours and the effect of the sinemet or stalevo lasts much longer up to 5 or 6 hrs. In ON condition, so in those days i only taked 1 stalevo and 1/2 sinemet and a feeling of well being because of less fluctuations. My neuro is on vacation and not answer me. Could i try with this regimen daily?, is risky to take 2 pills of clonazepam 2mg daily? I appreciatte all your recommendations in advance. M.V.
  10. Dear Doctors, I`m male 50 yrs dx, PD since eleven yrs, I had DBS surgery in 2010 in Gpi billaterally, I was implanted wih Brio system from St. Jude. After several setting parameters adjustments recently, my Neuro decided to put me on monopolar, impedance side 1 (left)=354, side 2(right)= 218, frecuency both sides=150 hz, pulse width left=175, right=112 and he gives me a window to control myself for amplitude from 3 to 4.5mAmp in both sides with my patient control, I usually use 4.1 left, 4.5 right. For meds he told me to take 1/4 sinemet 250/25 alternated with stalevo 100mg every 3 hrs, with these I feel majority of time in “off” , I told him this and he recommend me to increase sinemet to 1/2 pill. But with these I started to feel disturbing fluctuations and diskinesias that forces me to set at bottom in 3 the ampliude. I would be better using only Stalevo without combining with sinemet to reduce fluctuations and sudden diskinesia ?, what dose would you rccommend me? I want to be more stable and functional. I comment to my Neuro that here in Mexico City Stalevo is expensive maybe fo that reason he told me to combine. Is it true that Lexapro slow progression? Thank you for all you help.
  11. Also, I forgot to mention that my Neuro recommend me to take Lexapro to feel me more better and he mention this medication seeems to slow the progression of the disease, it's that true?. I have not started with this med because I feel afraid of secondary effects and I don´t want to become addict to a new drug and I prefer to keep motivated by myself. What´s your opinion about taking this med?
  12. I´m 48 male, dx PD since 2002, I was implanted with dbs brio system from St. Jude in August 2010, before dbs I had morning dystonia on my left foot, diskinesias, speech problems, fluctuations on/off and rigidity. After dbs my foot dystonia dissapear completeley, I can sleep 7 to 10 hours, much less diskinesia, more weight gain because i feel more apetite, now I feel less fluctuations with much less medication BUT NOW I worse my speech problems but I think this is because my levodopa intake, in the mornings without levodopa my speech is fluently and more better than when I start taking meds, also I had more walking problems than before, and still fluctuations due to meds, that's why I would like to try what happen if I don´t take any of my PD meds. Could I try to see how i feel ? Is there any risk ?. Thank you for your recommendations & comments in advance. At present I take : 8am 10;30am 12 2:30pm 5pm 7:30pm 10pm stalevo 100mg 1 1 1 sinemet 250/25mg 1/4 1/4 1/4 1/4 And my last setting parametes are (I don´t understand this) : june 6, 2012 impedance = 779 ohms Amplitude = 4.1 mAmp Frecuency = 150 Hz. Pulse Widh = 100 ms Mode = Cont. Telemetrics = ok Batery = ok Electrodes = 9- 10+ Thanks for all your help.