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MIMILASTER

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MIMILASTER last won the day on July 16

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About MIMILASTER

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    near Bordeaux (France)

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  1. MIMILASTER

    levodopa challenge

    How about submitting your question to Dr Okun in ASK THE DOCTOR? He will be able to give you an answer based on his experience as a Movement Disorder Specialist. Regards, Mireille
  2. MIMILASTER

    DBS Programming Sessions Per year

    Dear JB and Kaydee, Just as I post my answer, I see you both have a Boston Scientific Dbs. I have a Medtronic so programming may be different. I go forward with my post as there are general considerations as well. JB, I am so glad to read that you are “Happy to report that [your stimulator] is running pretty good now.” How wonderful to see you have been under the best hands! If you ever meet Elena Moro, tell her her reputation among patients spans across the Atlantic from Grenoble to Toronto through New Brunswick. Let me share with you my personal experience, as a sort of pioneer back in 2000. The situation was entirely different, we were still in the experimental phase; the programming equipment was cumbersome (the size of an attaché case) and there was no remote control for the patient. Therefore doctors were far more cautious in their choices of parameters because the patient would be left with whatever settings were chosen and no other option than to keep these settings until the next appointment. Even switching on and off the IPG was an unwieldy procedure: you would need to apply a strong magnet on the stimulator and count to 8 to switch it off. The procedure was so erratic you made sure you would not have to use it! As I was living only one hour from the hospital, my neurologist was willing to see me as needed, in case of uncomfortable situations; I guess he felt responsible for the poor results of the parameters chosen and wanted to make up for it. He even gave me an appointment on Easter day. The only part we, patients, had in the programming procedure was to tell the neurologist how we felt with a given setting. A simple, oral report. No standard form nor wording. It takes time to explore all options available, given your individual case, the exact position of DBS electrodes within the STN and various other parameters. At the time, doctors did not aim at stopping meds altogether, as it was deemed to favor depressive mood. My meds were considerably reduced, I don’t have the exact figures in mind but the change was quite impressive. Surgery stopped my tremors altogether and I have never had any more tremors since March 15, 2000, the day of my first DBS. This in itself was quite an achievement as it was my major symptom. Then again, I developed walking problems which I had never experienced before. I also had stimulation induced dyskinesias. What I would like to stress is that programming takes into account the exact position of your electrodes in the STN. The location will induce certain effects which will apply to your specific case and not to another patient whose electrodes are located differently. What applies to Patient A will not necessarily be true for Patient B. That’s why, given the complexity, you need to Have a really dedicated programmer who wants to achieve best results for his patient and who does not give up easily. The programmer plays a major role in a successful DBS surgery. Take good care both of you and keep us posted. mireille
  3. Hello Dr Okun, I am trying to understand why i have been experiencing lately severe worsening of constipation. I am wondering if recent changes in stimulation parameters could be the reason. Changes were only plus ou minus 0.2 / 0.4/ 0.5 Volts on either side. I am at loss finding an explanation to this new development which makes every day life miserable. Regards, Mireille
  4. According to a recently published study, https://www.ncbi.nlm.nih.gov/pubmed/29956417. “Rasagiline, an inhibitor of MAO-B, decreases colonic motility through elevating colonic dopamine content” Constipation is mentioned as a possible side-effect of Rasagiline, but according to this study, “long-term administration of rasagiline could increase colonic dopamine, thereby inhibiting colonic motility.” I understand these are conclusions drawn from one study only but I would like to have your opinion on this. If we suffer from severe constipation, would it be possible to try and stop Azilect to see if it’s the culprit. If so, how long would it take to show a difference and would tapering off be necessary. Thank you for your help.
  5. MIMILASTER

    Good morning!!

    Dear JB, Your talent as a writer and your wonderful sense of humor will always help you go through the most uncomfortable experiences. To be able to see a situation from a distance can be a lifesaver. The first part of the calibration procedure, defining a “no fly zone”, can indeed be an upsetting experience, as you watch someone trigger undesired feelings in you ; I had ungovernable mirthful laughter, that made a fool out of me and, what was very unsettling, a point where I was totally incapable of voicing one sound. Totally mute ! But you have been through this and now you are entering a new phase. It may be unpleasant and long, depending on how easy your case is (mine is still difficult). It would certainly be more convenient if you didn’t have to travel such a distance to see the DBS team, but things could be worse. I live 120 kilometers from the Bordeaux Hospital where I receive follow up treatment, which I find decent enough. It is going to take time, you know it, but it’s only normal you get impatient, after waiting for so long. It is certainly not fun to have to suffer the stares from not very thoughtful train riders and I can feel you were very uncomfortable and in physical pain as well. But you managed to turn this unpleasant situation into a funny story. Chapeau bas, mon ami ! Keep faith and Keep us informed. Regards, mireille
  6. MIMILASTER

    Good morning!!

    Hi Emma, Does that mean you have been enjoying same beautiful weather like we had the last week of May ? IRELAND is such a beautiful country. You should all go visit Ireland, guys. I fell in love with your country, Emma. Hope JB is passing his stimulator's "calibration tests" with flying colors. Mireille
  7. MIMILASTER

    DBS Programming Sessions Per year

    Normally every six months, more frequently if need be Mireille
  8. Thank you, Dianne, for this very useful information. I had never heard of websites such as patientslikeme. It sure will be appreciated by all. Mireille
  9. MIMILASTER

    Good morning!!

    Dear JB, I am glad to read you are doing ok, although I sense some impatience on your part to finally get started with programming. It is indeed a different procedure from what is generally reported. But it is definitely a better idea to wait until all side-effects from surgery have subsided before starting sampling the various options available for stimulation. You reap the benefits of years of experience with previous patients. If they try certain settings while the effects of surgery are still there, they may draw false conclusions from these initial attempts. That’s how I analyze this difference in procedure. In my case, stimulation was started within two weeks after surgery. I think the support of someone who has been operated by the same team and went through the same procedure is indeed the best assistance you may get. Do not hesitate to ask questions to the doctors who will in charge of programming your stimulator. Have faith, everything will be allright. Take good care of yourself and keep us posted ! Mireille
  10. MIMILASTER

    Drug Interaction

    Hello Mark, I suppose the same applies to osmotic laxatives ? Regards, Mireille
  11. MIMILASTER

    Good morning!!

    Funny, EM, I am currently visiting your country ! I am in Cork. Love Ireland, such friendly people. mimi
  12. MIMILASTER

    Good morning!!

    Maybe you are going top fast. You should rest, rest, rest . Hang in there ! You ´ll make it big hugs Mireillle
  13. MIMILASTER

    Good morning!!

    I had a first DBS in March 2000, but one electrode was suboptimal. So I had resurgery on that side in 2002, which improved the result quite dramatically. Resurgery was done in Grenoble by the Benabid team.
  14. MIMILASTER

    Good morning!!

    hello Jb CONGRATULATIONS ! You have now joined the "International DBS Club". I am delighted to hear that you are doing well. I remember how strange it is to feel good at last and not be able to rejoice totally for fear it is only temporary and due to lesion effect. Good for you if you can sleep even if it is during the day. Could your shoulder problem be a consequence of feeling tense during surgery. It would make sense that keeping the same position for so many hours (my first DBS was 13 hours !) would create tensions in your body, in your case the shoulders. Sleep as much as you can and keep us posted. I am so happy for you. Regards, Mireille
  15. MIMILASTER

    Good morning!!

    JB, I wish you all the best for May 8 and May 10. I will be thinking of you all day (won't forget the 6 hour time difference !). I am sure you will be doing fine. Remember you are under the best hands you could think of. i'll send all good vibrations possible to benefit you and the operating team. Keep us posted on how you are doing. Big hugs. Mireille
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